What this is, is an amazing act of kindness. A non-profit organization started by me! The phrase 'a photo speaks a thousand words' is true! Photos are sometimes all you have.
I am looking for families with Miracles! I am looking for families with children who have a life-altering disease, illness, disability or simply have a miraculous story and have overcome so much in their little lives! To you I promise this;
'To give you memories to last a lifetime'
You will receive a FREE photo session. No extreme measures should be taken. I want to capture your Miracle just as they are, in their moment!! You will receive a disk with images to print and keep forever!
In return, we just want your story! Posted here, so maybe your story can help somebody else through the same thing!!
Life is Short. Time is Precious. Miracles Happen!
Message me today! Tell me your story!!
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Meet My Miracle
Ehden is the youngest of 3 boys! This photo was taken on May 8th 2013, at 2.5 years of age, when he was cleared and discharged from the Cardiologist as a healthy patient with a strong heart!! He is 9 years old now!!
For 2 years I watched my seemingly healthy boy grow, cry, laugh, fall, succeed, play, run wild and free… all while I closely and cautiously monitored him. Making sure his breathing wasn’t too hard, and continuously listened to his heart with a stethoscope to make sure his heart rate was where it should be. (yes, I carried it around in my purse) I made him sit out while his brothers played, do a lot of running or ‘hard on the heart’ things. I was always hoping for the best, but always ready for the worst. Being worried if his heart was going to be able to keep up with my very busy boy. I watched him go through tests, with wires so thick that you could not see his chest, that literally weighed him down. Scan after scan, test after test and no end in sight.
Ehden was born with a Heart Murmur. Only, we didn’t know that until he was 35 days old.
When Ehden was born on March 27th 2010 via scheduled Cesarean at 12:30pm he swallowed some amniotic fluid, and was on a respirator and IV for his first 48 hours. Little did we know that this would be the least of what was to come.
On May 1st 2010 we woke like any normal day, only within a few hours Ehden went from a happy baby to a very unhappy baby. He wasn’t holding food down, he was screaming no matter what we did to try and soothe him. He wasn’t acting like Ehden and being 1 month and 4 days old, I knew enough of his temperament to know that this wasn’t my boy and something was wrong. I told Colin that something seemed off, something was not right. He said I was being over paranoid and that babies cry. He was right. But, this wasn’t just a baby crying. There was something wrong, and my gut knew it. I made an appointment with the after-hours on call doctor at our family office and brought him in. Aside from him being noticeably upset, crying and screaming, the doctor couldn’t find a cause as to why he was so upset. No fever. Mouth and throat was clear. No rashes. Chest sounds were clear. He was stumped. There was nothing he could physically see that could be causing him this much discomfort. He looked up a few things, pulled his file and made a call to the pediatrician. He suggested that because of his age, he would prefer that I bring him up to see the pediatrician at the hospital and that she was waiting for us. I called Colin on my way to the hospital to get him to call my Mom, get her to watch Eric and Ethan and for him to get to Cambridge Memorial ASAP.
We arrived at the hospital and went right up to the NICU. The nurse right away wanted a urine sample and blood. She pricked his foot, put a pee bag on him and left. The pediatrician came in about 20 minutes later, fired off a bunch of questions at me, about what I cannot remember. I think I answered her to the best of my ability. She said she would like to do an assessment and go from there. She listed to his chest for 35 minutes. Yes, THIRTY-FIVE minutes, no talking, nothing.. just listening. During this time, Colin showed up. I told him what I knew, which was nothing. Then we waited. It seemed like forever. When she stopped listening, she felt his belly, looked in his eyes, and left the room without a word. She returned a few minutes later with a file and a nurse. She asked if we were aware that he had a heart murmur?!
WHAT?
Yeah, now my nerves and anxiety and stress and everything Mommy in me went into panic mode. I had no idea what a heart murmur was so my very first thought was that my babies heart was broken and that he was going to die. I instantly started bawling and didn’t really hear anything she said after that.
She admitted him to the NICU and told us to get comfortable.
There was lots of tests after that. A lot of poking my very septic baby. They could not find a vein that didn’t pop when they tried to put in a central line. He was getting very dehydrated, and with the test results coming back they needed a vein and fast. After poking him nearly 40 times, they FINALLY found one that worked in his foot. They mentioned putting it in his head, and my fears went into play. I felt helpless. Every time they poked him he screamed louder then the time before. I cried with him. I literally felt his pain.
They sent him for a ECO at 1am, and had the results pretty quick. His murmur was in the bottom left ventricle, and was a little bit smaller than an apple seed. Which is pretty big for the size of a little baby heart.
All of his blood and urine came back normal with the first set of tests, so other than the murmur that we just found, there was still no clear reason why our baby was so upset and unhappy. They took another bunch of blood and sent away 10 different cultures to be examined. Hours went by with no answers and nothing to do but try and keep him comfortable. Between me and Daddy we got maybe an hour of sleep that night, or at least that’s what I remember.
It was about 4:00pm the next afternoon when our room was flooded with medical staff saying infection and isolation. No one was allowed to come in unless they were gowned and masked, and we were not allowed to leave our room. Other then that though, they didn’t elaborate. We just wanted answers. He was hooked up to heart monitors and breathing machines, IVs and BP monitors. They started a course of antibiotics through the IV and said just to give him time.
The nurses seemed very useless for information, and I guess I know now that they really can’t say anything… but I was so mad at them, because every time I asked if he was going to be ok, they couldn’t give me and answer either way. I felt like they were hiding something from me and didn’t want to tell me that my child was dying, but couldn’t tell me that he was going to be ok either. I am a very, ‘give it to me straight’ kind of person and I felt like I was being ‘dinked’ around, if I can think of a word that described how I felt, that would probably be it.
It wasn’t until the following day that I saw the pediatrician and asked her to be honest with me and tell me what we were dealing with. She said he wasn’t good. That he had gotten an infection and it is in his blood, probably from a ‘normal’ virus that if the murmur wasn’t there his body could have fought off, but because of the uncaught murmur, his body was losing, and it had spread like wildfire into his blood.
My first reaction was to blame someone. And I did. I blamed the nurses and doctors who’s care he was in when he was born. They should have caught it when he was born, shouldn’t they? They should have done something about it 37 days ago. They should have listened longer and harder and found it when he was hours old. That could have prevented this. That would have made it so that right now my child wouldn’t be covered in cords, hooked up to scary machines and being pumped full of god knows what. They failed him.
She assured me that those nurses and doctors did everything correct and that lots of children are born every single day with heart murmurs. Most of the time they are harmless, and Ehden’s was in fact harmless, only Ehden’s was one in 1000 that didn’t close hours after birth, and that it would close, it would just take longer.
She told me that my gut was right. That my Mommy Intuition didn’t fail me, I knew that something was wrong and acted on it, and I saved him from a lot more dangerous situations he could have been in if I didn’t bring him in when I did. Because his body was in septic shock and dehydrated when I brought him in, things could have went very wrong, very fast if I waited. It could have been fatal…
Those words stopped my heart. I literally could not breathe. Colin had to shake me. Get me to focus. All I remember him saying is that ‘I cannot do this because I need to be strong for Ehden.’ It took a few moments to get my thoughts on track, to settle myself, and remember to breathe. At that moment, I decided that I would not let this beat him. I kissed Colin, picked up my baby boy and sang. We danced. We laughed. We talked. I watched him sleep. Colin watched us sleep. I watched his heart monitor beep beep.. beep beep beep.. beep. The most annoying sound was like music to my ears.
We were in isolation for 5 days and in the hospital for a total of 11 days. Over Mothers Day 2010, which Eric and Ethan spent at the hospital with Me, Daddy and their baby brother. Try explaining to a 4 and 2 year old why they have to come spend afternoons in the NICU to be able to see their brother, wear funny looking dresses and a mask on their face all day. Board games only last so long, and TV channels in a hospital.. well.. they Suck! But they asked everyday, to come up and see their brother. Thanks to our parents, Colin and I both were able to stay with Ehden at the hospital, and get him better together. We wouldn’t have been able to do that without you! Thank you!
On May 9th 2010, his routine tests came back and I heard the most amazing news! Ehden was getting better!! His white blood cells were going down, his sepsis was leaving, his breathing was better and he was taken off his pain meds. He recovered very fast, shocked the doctors on how well he responded to the meds and didn’t suffer from any other complications. He put on 6lbs while on IV fluids, so my 45 day old baby weighed 15lbs when we went home. He lost most of it within a few days, but he never seemed as small after that!!
On May 11th we were able to take our boy home. It was like bringing him home for the first time. You always hope going in to have your baby that everything will be ok, and are so excited to get them home and learn all about them. Only this time, we knew him. We had him for 45 days, but bringing him home that second time was like heaven. There was a time not long before that, that I thought my baby was dying.. Bitter Sweet!!
From then on, we had an appointment once a month with the pediatrician. Lots of monitoring, and trying everything in our power to keep him healthy, so that his little self wouldn’t be compromised again. That meant missing tobogganing trips in the cold fun, and not splashing in the rain puddles with Daddy, Eric and Ethan. We would watch from the window! It meant that when friends were sick we avoided them, and when each other was sick, we steered clear from the baby with a weak heart, therefore giving him a weak immune system. I may have went overboard with the sanitizer. Germs were my new worst enemy, but anything to keep them from my boy.
Every month we would go back to see the pediatrician, and she would quietly listen for what seemed like forever. Some visits were “still the same” others were “smaller!!” Every 3 months we were sent for ECG’s and ECO’s. Slowly, bit by bit, his murmur was in fact shrinking!!
Never in my life did I think that something like this could happen to me. That my child would be so sick and I could do nothing to make him better. It is thee most horrible feeling in the world. Nothing can prepare you for something like this, and no child should suffer. Ehden was lucky. We were lucky. For 2 years, every month we would see the doctor. For 2 years, everyday I would fight with germs. I would listen to his heart. I would hold him tighter.
Going to that last appointment at the cardiologist office on May 8th 2012 was just nerve wreaking from the start. We didn’t know that when we would leave there that day that that would be the last time were going to have to go there. It was such a routine for 2 full years that it just seemed like normal to us. Ehden was older now, and knew what this office meant. He was a busy boy and didn’t like to be weighed down and forced to sit still while scans monitored his heart. He didn’t understand, and it was just not fun for him. One last time, we laid him on the table and let him watch movies on the DVD player. He tried to pick off the wires, and cried at the cold jelly on his chest. I played with his hair, and sung him his favorite song over and over trying to soothe him, just like I always did. I cried. Colin stood over us, watching, like he always did. He would subtlety place his hand on my shoulder and squeeze to assure me everything was going to be ok.
Colin was defiantly my rock though all of that. He held me up when all I wanted to do was fall to the floor and cry. I was strong for my boys when really I was a mess inside. I was strong for Ehden and his many many doctor visits, for Eric and Ethan who didn’t understand why Ehden was sick and needed special care, and different treatments. Colin was there for me. He gave everything a calm feeling. When my head felt like it was in the middle of a storm, he calmed it. My anxiety would subside, my stress would fade, my nerves calmed. He didn’t have to talk. He just needed to be there. Hug me. He just knew what to do, what to say.
He would do special things with Eric and Ethan to show them that they too were still just as much as important as their brother, when Mommy needed to make sure he stayed healthy. I missed a few things. A few soccer games, fun in the snow, bike rides, but Colin made that up, and as much as I regret missing some of those things, I know it was for Ehden to be healthy and safe, and they had the best Dad in the world making it up!
After his scans on May 8th 2012, we waited in the tiny office for the results, like we did every visit. Little did we know that coming was the best news I ever heard. The doctor walked in and was a little disorganized. They had just started using iPads as their new ‘paperwork’ and this doctor was ancient, he himmed and hahhed for a few minutes and said “ah haaa! Here it is!” He read.. some more.. looked up at me, then Colin and patted Ehden on the head and said “Ehden’s scans are completely normal! His murmur is no more” I was glad I was sitting because I swear I fainted. Instant tears, flooded from my eyes, Colin’s too! It was over. He high fived Ehden, mumbled a few other things and left us to collect ourselves. The last thing he said before he left was “I will not see this 2 year old again” and it was thee very best thing I’ve heard to date!! We sat in the room and cried for a few minutes, we hugged Ehden so hard he screamed to be let down, and then all of a sudden I got a really big urge to leave. I wanted to take my child and leave this place and never come back. So we did!
After that day, I felt like a huge weight had been lifted.. Like everything that we had gone though in the last 2 years was a dream. I still wondered if I should follow him around, chasing him with the stethoscope, but I didn’t. I was still paranoid, but he was cleared! I had to remind myself of that a dozen times but that feeling that my baby had a broken heart was gone. I knew that skinned knees and goose eggs were on their way, and I welcomed them. My boy could be a boy again, and not a sheltered baby who was weak..
Today we celebrate! Ehden turned 3, 42 days ago. He is bigger and busier then both his brothers combined. He keeps me on my toes and keeps Colin proud. His boy is happy and healthy!! Today is 1 year since our boy was cleared. Today is special!
I remember these memories so vividly. I remember the feelings my gut felt. The way my heart ached. The way I couldn’t stop my tears from falling. My helplessness. I remember the way I would get lost in his breathing. Watching his chest move up and down was like winning the lottery!!
We are not religious at all. We don’t go to church. We don’t teach our children about anything beyond what we are, what we see and feel, but I prayed so hard. I remember saying on numerous occasions that ‘I was sorry I didn’t ‘believe’ but if there is a God, please save our boy.. please help him.’ Today will always be a day we thank that someone or something that was watching over our boy. Today is Special.
Today, May 8th 2013; Ehden is Alive. Today Ehden is 1,138 days old! Today Ehden is Happy. Today Ehden has a perfect heart!!! ♥
Dominic Joseph Brutzki- Martindale was born on November 4th 2010. A beautiful, healthy bright blue-eyed baby boy!
At 20 days old, Dominic was suffering from a chest infection and various colds throughout his little body. This was a continuous battle since birth and doctors misdiagnosed them as allergies. On January 21st 2011 at the age of 3.5 months, Dominic was brought to the ER department because of a concerning lump in his stomach. The doctor diagnosed it as a hernia and sent him home.
Slowly, Dominic's fine and gross motor skills began to drastically decrease as he reached higher months in age. After the second time of Dominic ceasing to breathe, they flew him to Hamilton's McMaster Children's Hospital. They hadn't even gotten him through registration and the doctor said "I think I know whats wrong with him". Dominic underwent a Lumbar Puncture and was right then and there diagnosed with Krabbe Leukodystrophy (Crab-A) (Lou-koh-diss-trophy)
Krabbe Leukodystrophy is a rare terminal disease that affects the nervous system due to a complete absence of enzymes in the brain. Symptoms begin between the ages of 3 to 6 months with irritability, fevers, limb stiffness, seizures, feeding difficulties, vomiting and slowing of mental and motor development. Babies with Krabbe Leukodystrophy usually live between the ages of 9 - 15 months.
Dominic remained in the intensive care unit at McMaster Children's Hospital where he underwent minor surgery on May 9th 2011 to insert a G-Tube into his stomach to aide him with feedings and medication. He had physio therapy for his stiffness and spasms, along with other therapies to help him, including his blindness.
In June 2011, Dominic was moved to a home for the terminally ill located in Halton Hills, Ontario. In his last weeks of life, Dominic's body started to reject the fluids that were placed through the G-Tube. They tried Pedialyte to keep him hydrated, but his body was rejecting everything. They removed his G-Tube completely on August 1st 2011. On August 3rd 2011 at 4:21pm, 1 day shy of turning 9 months, Dominic took his last breath and grew his wings after his long, agonizing battle against Krabbe Leukodystrophy.
Dominic is my reason for starting 'Miracles'!!! I took one look at this little boy and fell in love!! Capturing his amazing little self was something I will remember for the rest of my life! If I can give someone the gift of a memory this way again, I sure will try!!!
Dominic passed away exactly 2 weeks after I took this photo. His loved ones will always have these photos to remind them of what and amazing Miracle he was!!! <3
Katie has Batten's Disease. Batten disease is a fatal, inherited disorder of the nervous system that typically begins in childhood. Over time, affected children suffer mental impairment, worsening seizures, and progressive loss of sight and motor skills. Eventually, children with Batten disease become blind, bedridden, and demented. Batten disease is often fatal by the late teens or twenties. Katie was born on Feb 15th 2006. She developed normally, reaching all of her milestones at the time expected until December 2007 when Katie had her first Febrile Seizure. At first the seizures were spaced out and started happening more often in October 2008. In July 2009, Katie was having 2-5 Myoclonic Seizures per hour. On November 9th 2010, after tests and mus-diagnosis, Katie was officially diagnosed with Batten Disease.
"we learned that day that our baby daughter had a genetic disease that currently is 100% fatal" said Katie's mom Donna Lockyer-Keeping.
Katie, after spending sometime at MacMaster Childrens Hosptial over Christmas 2014 and NewYears 2015, sadly lost her battle with Battens Disease on January 25th 2015; 21 days before her 9th Birthday.
You are free now, to run, laugh and play. You will be missed. You will always be loved.
You are free now, to run, laugh and play. You will be missed. You will always be loved.
This is Jordan. Jordan was born a very healthy, happy boy in Feb 2010. Jordan suffered a very traumatic few weeks of life and was left 100% blind and has some brain damage. He also suffers with Cerebral Palsy and will need assistance for the remainder of his life.
Jordan was a pleasure to photograph. He was simply amazing, and although he cannot see you, he connects with you in every other way.
He is truly a Miracle <3
UPDATE:
This is Jordan Now! Look at that smile!! Jordan is 2.75 years old and is doing amazing!! Jordan has had no seizures since Sept 20th 2012!! He is learning to make choices and he is starting to communicate with sounds and signs!! He's a happy amazing boy, and I was so lucky to see him this Christmas for pictures!! :)
Miracle <3
UPDATE #2:
Look who it is!! Jordan is doing AMAZING!! He is 3.75 years old. He started sitting all by himself on October 29th 2013!! He is going to start learning to communicate more by using technology and Jordan will be going to school!! He has been seizure free for most of the past year!!
Love this Miracle <3
UPDATE #3
UPDATE #3
Jordan came and saw me today on Miracle Day!!
He has just turned 4 years old and will be starting Junior Kindergarten in September. He has learned to transfer a toy from one hand to the other. Which is Amazing!!
He is starting to us a button for communicating with others. He is starting to show his personality more and more.
His family is excited by all the positive changes in him.
I loved seeing Jordan on Miracle Day and got to get some adorably cute pictures outside with him!!
This is Caleb. Caleb is 1.5 months old. He lost his Mommy 2 days after he was born. Caleb was born a healthy boy, happy and beautiful. While his Mom was in labor with Caleb, she had a heart attack and went into a coma. She passed away 2 days later, never meeting her beautiful baby boy!!
Caleb's Daddy, Aunts, Uncles and Big Brothers and Sisters, have defiantly filled in for his loss, but there is nothing or no one that will ever replace his Mommy.
Caleb's Daddy, Aunts, Uncles and Big Brothers and Sisters, have defiantly filled in for his loss, but there is nothing or no one that will ever replace his Mommy.
He gives a new meaning to Miracle!! <3
Meet Gideon
At 20 weeks you're excited that you're finally half way through your pregnancy. You head into your 20 week ultrasound with excitement, happy to be seeing your growing baby and thinking it will be an uneventful scan. But sometimes the doctors don't give you great news at this scan and that's what happened with this family.
At Jaclyns 20 week ultrasound she learned there was something wrong with their babys heart. They told them that their baby would be born with a congenital heart defect that would require multiple surgeries to repair.
The heart defect Gideon has is called Truncus Arteriosus.
When Gideon was born they told Jacyln and Chris they anticipated they would be in hospital for a month after his first open heart surgery to repair his defect and then he would be well enough to go home. They were wrong. Gideon had his first open heart surgery at just three days old. Thankfully it was a success. After two weeks in the CCCU they were transferred upstairs and began the process of getting ready to go home. However, Gideon had other plans. At just over a month old Gideon got a major infection called endocarditus and had to go in for a second open heart surgery. They had to not only redo the whole first surgery but they also had to cut out all the infection it had caused.
After this surgery the doctors anticipated he would be home in about six weeks, but once again that was not to be the case. Gideon had seemed to come to rely on his ventilator a little too much and when they tried to extubate him, he failed and nine short hours after he was extubated they had to re-intubate him.
After his re-intubation they discovered that his valves were leaking severely and so three and a half months later he is still in the CCCU waiting until Gideons heart is big enough to have his third open heart surgery, in which they will replace his two leaky valves with mechanical ones.
Once this surgery is complete hopefully he will be well enough to go home (which will likely be September or October if all goes well) then he will be back in less than a year to have these two valves replaced again as he will outgrow them.
This is just a brief telling of some of what Gideon and his family have been through, as it would take quite awhile to outline absolutely everything. I will keep with updates as they come.
UPDATE!!
Look at 9 month old Gideon!!
Gideon was born with a congenital heart defect called truncus arteriosus that was diagnosed when he was 20 weeks in utero. In his short life, Gideon has survived four open-heart surgeries – the first when he was three days old – in addition to a combination of five other surgeries and procedures, including a tracheotomy.
“They anticipated we would be here a month,” Jaclyn said.
A second open-heart surgery was required to clear up a major heart infection one month after the first. When his heart failed to beat properly surgeons were forced to do another surgery a few months later to install a mechanical valve.
Three weeks later, Gideon was rushed in for his fourth surgery when the valve stopped working due to a large blood clot.
“Through some miracle, probably the grace of God, he came through that,” Jaclyn said. “They were almost certain he would come out of surgery on life support and Gideon just surprised them and he didn’t need it. It was just unbelievable.”
Jaclyn, who spends every day with Gideon and stays at Toronto’s Ronald McDonald House with Persephone, said she wanted to show people what an amazing fighter Gideon is. His name means mighty warrior.
“I feel like Gideon is one of those kids who is beating the odds,” Jaclyn said. “He’s just determined and I thought it would be so great to have people see what a fighter he is, to see how strong my son is.”
Gideon takes each day in stride and is enjoying the extra freedom he has had since his tracheotomy.
“He is the coolest, calmest kid ever, he hardly ever gets upset,” Jaclyn said. “He’s just calm and relaxed and looks around and takes everything in.”
Gideon remains stable and is fighting everyday!!
Gideon’s 30-second segment can be viewed online at www.sickkidsfoundation.com/together/day.aspx?day=21.
It is with a heavy, heavy heart, I report that Mr. Gideon has gained his wings. Gideon was doing so well that on April 13th they moved him from SickKids in Toronto, Ontario to the Victoria Hospital in London, Ontario. On May 7th 2015, Gideon the Mighty Warrior lost his battle after an emergency surgery and not being able to control his blood pressure. After 11 surgeries and hundreds of procedures, Gideon is at peace. 1136 Bravery Beads, his countless smiles, and his memory are the only things that remain. Fly High Cheeks! <3
It is with a heavy, heavy heart, I report that Mr. Gideon has gained his wings. Gideon was doing so well that on April 13th they moved him from SickKids in Toronto, Ontario to the Victoria Hospital in London, Ontario. On May 7th 2015, Gideon the Mighty Warrior lost his battle after an emergency surgery and not being able to control his blood pressure. After 11 surgeries and hundreds of procedures, Gideon is at peace. 1136 Bravery Beads, his countless smiles, and his memory are the only things that remain. Fly High Cheeks! <3
This is Kaiden, which means "Fighter"
“We chose this name because of the meaning, and because we weren’t sure if would ever meet our little fighter. He has definitely lived up to that name and is now a thriving three and a half year old! “
Kaiden was diagnosed with "Cystic Hygroma," a rare birth defect, when his Mom 20 weeks pregnant. It happens to about 1 in 6,000 babies. His lymphatic system didn't form properly and he has pockets of cysts around his ear, cheek and chin. His chances of survival were about 30%. His chances of being genetically healthy were even lower. Obviously, he is here today and is a very happy, hyper preschooler!
He went through so much testing before he was even born. Amino, genetic testing, blood testing and weekly ultrasounds to make sure he was still growing and thriving. It all came back perfect. He beat all the odds, and is a true miracle! But it hasn't been an easy road to get to where he is today.
When Kaiden was born, you could hardly notice the difference in his face. But over the next couple weeks the cysts quadrupled in size, and he needed to get started on treatment before it affected his airway. Many children with this condition have trachs and g-tubes to help breath and be fed. Again, it’s a miracle Kaiden can breathe and eat on his own.
Kaiden has gone through about 10 procedures and one major surgery at 18 months old. The procedures, which started when he was one month old, consist of him being sedated, and draining and injecting the cysts with a steroid. This same steroid is used in chemotherapy treatments to kill cancer. The surgery lasted 9 hours, and removed about 80% of the cysts. He has had some regrowth, which is always possible. But as of today, he has had considerable improvement. Unfortunately, every time he gets sick his cysts swell and we just have to pray they will go back down. It's something he will live with for his whole life, and unfortunately, since it is so rare, there isn’t much research or treatment options. Also, different treatments work differently for each child. It's a very tricky condition to deal with.
“Writing this today, we are waiting to hear a second opinion from Sick Kids in Toronto. McMaster has exhausted all options in the procedure point of view, and we still have some work to be done on his ear area. We aren’t ready to do another surgery in that area, and it’s a very delicate area to work with because all his facial nerves stem from the ear area. We don’t want to risk losing his precious smile. I think as parents we have a harder time dealing with it then he does.”
He knows his ear is different, but yet doesn’t realize the difficult things that will come his way because of it. He is starting school in September and that is a whole new worry to parents, about bullying and other kids being mean. It happens, and has even happened when he was a baby. But on the bright side, he is a tough kid and is here with us today! He is a true miracle! And a true fighter!
“I now know why she printed me a picture of his precious face. Looking at the live screen and seeing that the only thing moving was his beautiful beating heart as he hung upside down inside me, I now know she wanted to give me a lasting memento of him just in case…”
The doctor’s told Allison later that day the baby she was carrying was sick. They didn’t know what was causing his illness and why he was not moving, but what they did know was that his greatest chance of survival was a premature birth via Emergency Cesarean. He had been sick for 3 days now and at just 29 weeks, Allison was terrified he was too small to fight this… whatever it was.
He was born quickly, weighing in at only 2lbs 4oz. “My only question was “is he alive? As the door to the resuscitation room swung open, I got my answer with the softest kitten cry I had ever heard. It would be weeks before I would hear that again.”
He was put on full life support and for 21 days, his life or death was being held in God’s large and loving hands. “I willed him to fight.” His Mom and Dad did not name him for days for fear of making the loss greater, should it occur. “We finally chose his name to be Lincoln and had the nurse put a name tag on his incubator.”
They were told that good days could turn to deadly days in the blink of an eye. They learned to treasure each breath, each moment of life. Over the months following Lincoln’s birth Lincon's Mom and Dad traveled to Toronto and then to London daily to be with Lincoln. His most serious issue seemed to be his lung development that appeared to be slow, if it was present at all.
They had been told Lincoln may not ever leave the hospital and if he did, chances were, he would not be a “normal” kid. “We knew it was very possible, Lincoln would never run or play sports, but we also knew God is a God of Miracles and we prayed daily for our Miracle boy.”
After several surgeries and setbacks, being the longest-staying resident at St. Joseph’s NICU at 208 days, 8 month old Lincoln was ready to go home!! He would go home on the highest amount of oxygen an infant was ever sent home on as well as a feeding tube, oxygen saturation monitor and occasional night nurse staffing. The rest was up to them, Mom and Dad.
“We were so happy. We always said “if this is as good as it gets, we are extremely blessed.”
To their pleasure and great excitement, Lincoln thrived at home. Within months he came off his oxygen and by 2 years of age, began eating on his own. He began to slowly catch up and meet more and more milestones. Tears of joy were constant. They had a boy that ate food! Lincoln also now walked and talked, smiled and laughed. At 4, Lincoln played soccer. At 5, he played baseball and hockey. These sports challenge him physically, unlike other children his age, but his smile is huge when he gets to join his peers in the games he loves.
Each day is special.
“Not a day goes by that we aren’t thankful for this precious Jewel God entrusted into our hands. We know his purpose here on earth is great and we can’t wait to see what the future holds.”
This is Lincoln.
Kierstyn was born October 2009
They noticed a bowing in Kierstyn’s leg where initially we thought it might have been club foot.
They were sent to a local bone specialist where they took x-rays and found that Kierstyn’s leg bone had no marrow or was not formed properly. This surgeon had never seen anything like this. They were off to sick kids Hospital in Toronto. Kierstyn was tested for everything it seemed and it was diagnosed in 2010 that Kierstyn had a very rare disease called Neurofibromatosis.
Kierstyn continued all sorts of tests for cancer, tissue testing and everything came back clear except for this tibia and fibula in her right leg.
Neurofibromatosis is known to prevent healing, can cause cancers and can become a violent attack on the body.
October 2013, Kierstyn’s diseased bone broke. She was rushed to Shriners Hospital for Sick Children in Montreal where they did a 5 hour surgery removing diseased bone and replacing it with rods and bone growth stimulant. After 8 months Kierstyn is not healing. Her next appointment in Montreal with her surgeon is in June 2014.
She is cautioned that the bone could break again at any time.
Kierstyn is active and happy and keeping life positive for her, Kierstyn is so active it is scary as she has no grey area where she understands pain.
“We are so blessed to have her and enjoy all moments! “
On January 20th 2013 Ayverie started throwing-up (which was thought to be the flu). On January 31, after 2 ER trips and numerous visits/call with her family doctor he sent her back to the ER to see a pediatric doctor.
Ayverie was taken by ambulance (singing the entire way) to McMaster Children's Hospital where she was admitted to intensive care. The next morning she had a MRI and our worst fears were confirmed. She had tumor on her brain as well as lesions on her spine. Ayverie needed surgery as soon as possible to remove the tumor, for the best chance to survive.
“Feb 1st 2013 I was told that my little girl had a 5cm mass on the back of her Cerebral Cortex. Ayverie's and my life in that little moment changed forever!”
Ayverie’s Mom was told that Ayverie only had a 20-30 percent chance of coming through the surgery the same little girl that went in. The magical, talented and blessed hands of the neurosurgical team operated on Ayverie and removed the majority of the tumor. Ayverie came out of surgery that same sassy little girl that went in!
The next week on Feb 8th 2013 she was diagnosed with Medulloblastoma, a stage 4, malignant tumor/cancer. Ayverie has been one of the strongest and bravest little warriors this past year.
February 28th 2013 Ayverie began radiation and chemotherapy. She has endured surgery, 30 radiation treatments with 6 mild chemotherapy treatments and then 6 heavier chemo treatments.
Throughout Ayverie's journey she has remained is a little diva who loves clothes (especially shoes). All through chemo she never cared that she lost all her hair, she told everybody “I can finally feel the breeze”, she embraced the opportunity! She wore head scarves and hats to match every outfit.
Ayverie loves to sew, knit and is a crafty little thing! When she got a feeding tube, she embraced the fashion opportunity again and sewed feeding tube pouches to house her feeding tube.
Ayverie just loves life, and never once accepted cancer to be a negative, and always believed in herself and that she would kick its butt!
On November 29th 2013 we received the best news! Ayverie was CANCER FREE!
McMaster Children's Hospital has become our second home and an extended family. We have made many amazing and forever friendships.
Ayverie still has a long journey ahead of her but today she is 6 months Cancer Free.
“Hannah was born March 6, 2012 weighing 9lbs, 5oz. She was perfect. The first 6 months of her life everything was normal. Hannah was developing well and hitting all of her milestones. Then at the end of August, Hannah started showing some concerning symptoms, she stopped eating and was breathing very heavily. After several visits to the doctor and local ER, a chest x-ray to confirm pneumonia showed something quite different. Hannah’s heart was quite large and she would need a consult with a Pediatric Cardiologist.
Hannah would have to be monitored closely, medication would be started to see if that would improve her heart function, if it didn’t and she started to deteriorate then the only option would be a heart transplant. There was no surgery that could be done to correct the loss of function. Testing was done to see if Hannah’s condition was hereditary or if a virus attacked her heart. Those tests were all inconclusive and the reason still today is “unknown”.
Hannah was transferred to Sick Kids Hospital in Toronto for a 72 hour observation period. Further testing and monitoring was done and the goal at this point was to get her eating and being able to tolerate her food and to find a stable dosage of medication so that we could go home and then see how she progressed. A feeding tube was put in to alleviate the strain eating had on her heart. Hannah was not tolerating food at all. She was continually vomiting and it was becoming clear that we wouldn’t be going home anytime soon.
The next 3 weeks were a downward spiral, Hannah was extremely irritable and her heart rate was over 200 beats per minutes. Hannah needed to be transferred to the critical care unit and listed for a heart transplant. She was intubated and sedated in order to take the strain off of her heart; she stayed that way for 3 weeks. It was decided to extubate Hannah to see how she handled it; hopefully the rest was enough to help keep her going until a donor heart became available. If not, Hannah would have surgery to receive a Berlin Heart, an external pump that would be surgically attached to her heart to do the work of her left ventricle. The Berlin Heart would buy us more time will we waited for a donor but was not without its own complications. Having any external device in the body was a potential for infection, and also there was risk of blood clots forming in the pump that if released into the blood stream could cause a stroke.
Hannah did ok being extubated and was somewhat stable for about 2 weeks and then she started to decline again. At that time it was decided that it was time for the Berlin Heart. She had surgery on November 6th. After recovering from surgery Hannah was doing a lot better. We were able to start physical therapy with her, read books and play. Hannah was much more alert and interactive, it was great to see. We still experienced some highs and lows during that time, including having to change the pump due to a clot. Waiting was excruciating, the simple not knowing what was going to happen and just sitting by Hannah’s hospital bed for 16-24hrs a day was exhausting and emotionally draining.
Then on January 5th, 2013 we received the call we had been waiting for, there was a heart for Hannah! She went into surgery that evening. It was an agonizing 11hrs before we got to see Hannah. She came thru the surgery wonderfully and within a week she was out of critical care and back up on the cardiac ward. Feeding again would be our biggest challenge but after only 3 weeks post-transplant Hannah was discharged from the hospital to Ronald McDonald House as she needed to be near by the hospital for follow ups and appointments. Then after a month there we finally got to go home, after 177 days.
The past 18 months since Hannah’s transplant has been full of challenges but overall Hannah is doing very well. We still have issues with eating and weight gain and Hannah is delayed with her speech but we are working with a great team to resolve all of these problems. Hannah started daycare last fall, which has been great for the interaction with the other children but a challenge with all the viruses this winter. Hannah is on immunosuppressant’s to help her not reject her heart and they make her very susceptible to getting sick. Hannah is a very bright, curious and playful girl with eyes and a smile that melts our heart but she also is very feisty and stubborn, it’s the fighter in her that kept her going thru everything.
Hannah truly is a miracle!
Hannah truly is a miracle!
It’s difficult to explain your feelings at that time, we were so excited that Hannah would be given a chance at life but so aware that another child’s life had ended and what that family was going thru. We were so thankful for the family’s strength to make the choice to donate their child’s organs, they saved Hannah (and who knows how many others) and we are forever grateful.
I hope that if you are reading this, you take away what a gift life truly is and it can be taken from us all too suddenly. The number of organ donors registered is very low and many people are waiting for donors, for heroes who will save their lives. Please remember Hannah and how a hero saved her life, be a hero to someone else. Register to be an organ donor. Beadonor.ca”
This is Holden. Holden is 19 months old!
Holden has recently been diagnosed with Lesch-Nyhan Syndrome. This is an extremely rare genetic condition. Holden's case is a random genetic mutation which is even rarer, as a normal case where it is genetically passed is one in a million. There are only 4 other boys with this in Canada. It is caused by the deletion of the HGPRT1 gene which is responsible for the production of an enzyme that controls uric acid in your blood.
The absence of this enzyme causes uric acid to build up in the body and cause kidney issues; Holden has had two kidney stones. Neurological problems effecting muscle control, and self-injurious behaviors such as finger and lip biting. Holden is non-verbal and cannot sit or stand on his own. He just learned to roll over at 17 months. He takes medication twice a day to prevent kidney failure due to the inability to process uric acid.
There is no cure for what Holden has because it's a missing gene. The only things they can do are offer physiotherapy for the motor skills and treat the uric acid and other symptoms as they arise. Holden's life expectancy is 20-25 years which is a hard thing to handle. You keep the hope because there are a few who live longer and one gentleman just passed away at 52. It all depends on how each person’s body handles the load put on it.
Holden is a happy fun loving little boy who's smile can light up anyone’s day. He enjoys playing with his Hot Wheels collection and race tracks he loves his mustangs and has a whole shelf devoted to them! He loves swimming, music, hockey which he loves to watch his Montreal Canadiens play with his Dad! He won't go to sleep if the game is on he is a diehard fan already!
He loves getting into trouble with his older sister Mallory who loves him tons and is always including him in her mischievous ways! The two of them are like two peas in a pod when they are together. He seems to use her to gauge his safety in certain situations because he is so extremely dependent on others.
He loves to go to car shows and swap meets with his Dad and Grandpa where he has gotten to meet Danny "The Count" Koker from the TV show Counting Cars. He also has an adapted power wheels Corvette so he can cruise the car shows in style as well as race his sister in her Jeep.
Holden lives as normal life as possible aside from the many doctors, therapists and appointments and none of this would be possible without the support of his family, friends and community and all the staff at KidsAbility.
Manda was told by doctors when she was 16 that she had PCOS (Polycystic Ovary Syndrome) and that she would never be able to have kids...when she was 23 she and her boyfriend tried for months to become pregnant with no luck.
After months with no success, she felt very sick but thought it was just the stomach Flu. She was tired, and couldn’t keep anything down. A week or so had passed and she still wasn't feeling well so she decided to get a Pregnancy Test just to be sure. Though the results were not what she thought. They were positive! They were beyond ecstatic! They were finally going to start their family! Little did they know, the pregnancy was going to be a hard one. Manda went for her first ultrasound and the results came back abnormal. They told her their baby had some signs of a few disabilities and that they were going to send them to McMaster Hospital to be followed during the pregnancy. Stressed and worried, they were not going to give up. They wanted this baby more than anything.
At each ultrasound the abnormalities were slowly going away. They were discharged from McMaster when they had a month til her due date and could be followed by her regular OB for the last of her pregnancy!! But, that last month Manda was in and out of hospital almost every day. She was very dizzy. She could not walk or keep anything down. She was very dehydrated. On Nov 21 2013 she went into hospital with contractions she was hooked up to see how baby was doing. Three hours had past with no movement from the baby. They had tried everything to get the baby to move. They admitted her and said they were going to break her water to see if that helped. After they broke her water nothing happened so she was rushed to have an Emergency Caesarean.
Avabella was born on Nov 21 2013. Weighing 6lbs 1oz and was 19inches long! She had Meconium in the fluid and they said if she would of delivered naturally that she could of died.
Today this is Avebella!! A happy, healthy 6 month old baby Girl!!!
After months with no success, she felt very sick but thought it was just the stomach Flu. She was tired, and couldn’t keep anything down. A week or so had passed and she still wasn't feeling well so she decided to get a Pregnancy Test just to be sure. Though the results were not what she thought. They were positive! They were beyond ecstatic! They were finally going to start their family! Little did they know, the pregnancy was going to be a hard one. Manda went for her first ultrasound and the results came back abnormal. They told her their baby had some signs of a few disabilities and that they were going to send them to McMaster Hospital to be followed during the pregnancy. Stressed and worried, they were not going to give up. They wanted this baby more than anything.
At each ultrasound the abnormalities were slowly going away. They were discharged from McMaster when they had a month til her due date and could be followed by her regular OB for the last of her pregnancy!! But, that last month Manda was in and out of hospital almost every day. She was very dizzy. She could not walk or keep anything down. She was very dehydrated. On Nov 21 2013 she went into hospital with contractions she was hooked up to see how baby was doing. Three hours had past with no movement from the baby. They had tried everything to get the baby to move. They admitted her and said they were going to break her water to see if that helped. After they broke her water nothing happened so she was rushed to have an Emergency Caesarean.
Avabella was born on Nov 21 2013. Weighing 6lbs 1oz and was 19inches long! She had Meconium in the fluid and they said if she would of delivered naturally that she could of died.
Today this is Avebella!! A happy, healthy 6 month old baby Girl!!!
In February of 2012, Matthew and Emma Sherlock of Barrie, were notified of a newborn baby girl with Down Syndrome that was available for adoption. Because Emma was unable to bare any more children due to a complication resulting from her first pregnancy with their son Gordon, this baby named Allyson was an answer to their prayers. After meeting this sweet... child, the whole family fell in love with her. After what seemed like an eternity, Allyson's adoption became official in March 2013.
As part of the adoption process, Allyson was checked regularly by her pediatricians with frequent blood work. These tests revealed chronically low platelet levels. In July 2013, the accumulation of these tests led the pediatricians to make a referral to the hematology clinic at Sick Kids Hospital in Toronto, Ont. During repeated bone marrow aspiration attempts and bone marrow biopsies, Allyson was diagnosed with Acute Myeloid Leukemia of Down Syndrome (AML). Allyson began treatment in September 2013, and after six long rounds of chemotherapy, and nine months in Sick Kids Hospital, Allyson was declared in full remission!
Recently, July 2014, a routine checkup showed some abnormalities in Allyson’s blood. After a bone marrow aspiration test, the Sherlock’s were informed that Allyson had relapsed and needed to do two more round of treatment.
Allyson’s Dad Matthew shared "This little girl is my hero! All twenty five pounds of her. She has endured more pain in her 2.5 years then I have in 40. I continuously, helplessly watch her endure treatment after treatment. She never gets a solid sleep as she is interrupted every 1-4 hours. I love my little "Ally Bear". I pray that I am worthy to be her Dad."
The last round of chemotherapy eliminated the leukemia from Allyson's cells!
Matthew and Emma were with Allyson at Sick Kid's Hospital for a full day of tests last week (09/30/14) to ensure that she is in good shape for her bone marrow transplant procedure that will begin on Monday, October 6th 2014!
The Sherlock’s ask most of all for prayers. They have great faith that Heavenly Father is watching over them and their situation. The emails of support and encouragement are truly buoying them up. Thank you for being so thoughtful.
Secondly, please consider that saving lives is easier than ever. By offering to donate bone marrow, you can save lives threatened by cancers and blood diseases, such as leukemia, lymphoma and sickle cell disease. Please visit http://bethematch.org/ to learn how you can be a bone marrow donor and help one of the thousands of people, like Allyson, who need a bone marrow donation to recover.
-- After all the fighting this little angel has done. Allyson fought and beat leukemia once, only finding out a few short months later she had relapsed. Her journey came to an end. On January 21st 2015, Allyson grew her wings; 16 days after her 3rd Birthday.
Fly Sweet Girl <3