This is Kannon Foster, he is our sweet 4 year old son. He has a rare genetic disorder called Tetrasomy i5p, and is the 4th reported case in the world with this disorder. Before I get started on why our family needs your help, I would love to tell everyone his story. It's a long one, so just bare with me! I always tell people that Kannon is scarier on paper, than in person. And it's so true. Sometime we forget the things on his "paper" because we are so in love with who are son truely is, that all the facts and statistics on that "paper" disappear. Yes, at times it's a rough rollercoaster ride. And some days are challenging, but each day also brings us so much more joy than the day before it. Kannon has taught us (and when I say us, I mean all the people he has impacted) how to be strong, how to be selfless, how to love unconditionally, and so much more (but those are my favorites). He has opened our eyes to a world that we all knew about, but didn't understand it until we all lived in it. During my pregnancy, no one had answers. They only went off what they as dr's had to tell us, and what they thought (based on what they could see) Kannon would be like. We first found out about Kannon at my 20 week ultrasound, they told us they thought they saw something on his kidneys, but weren't sure because it was early. To be more specific, they said it could be Polycystic Kidney Disease (PKD). They sent us to a "high risk" OBGYN to check things out further, and turned out they didn't think he had PKD. Instead, they thought he might have something else called "fetal echogenic bowel". However, that too was later ruled out. In the beginning of my pregnancy, each follow-up Kannon was diagnosed with something different. The third appointment was probably the hardest on everyone, and that's when they told us that no he didn't have PKD, nor fetal echogenic bowel, but we think he has a cyst on his brain. From that day on, they told us something new each time. Towards the end of my pregnancy, they put me on moderate bed rest, and began doing stress tests and biophysical profiles (pretty much an ultrasound) weekly. Some of the things we got out of those appoinments were: He was behind on leg growth 3 weeks, behind on his stomach growth 4 weeks, I had low amniotic fluid (which was the ultimate reason why we had to have a c-section later), that he would be a small baby and that I wouldn't make it full term with him. They never said much about his lungs or the developement. His due date was April 29th, but they were 100% sure that we weren't going to make it to that day. We scheduled to induce on April 8th. I was admitted March 31st, and booked for an emergency c-section first thing the next morning. Kannon was born on April 1st. He weighed 4lbs. 11oz. and was 17 3/4 long. He was tiny. When he was born, they did losts of testing on him. Ultrasounds, MRI's, CT's, you name it, he had it. But most of what they thought they had seen in ultrasound was ruled out. Leg growth was perfect for his size, and his stomach was perfect too. They did an ultrasound on his heart, abdomen, kidneys, and head. His abdomen was fine. His kidneys had some minor issues that we still follow up on with Dr's today. Such as hydronephrosis. As far as the ultrasound on the brain, they did see some anomalies. Which is why they decided on doing a brain MRI to see further detail. The two major things that they were able to see were an arachnoid cyst, and partial agenesis of the corpus callosum (p-ACC). They have never seemed worried about the cyst since, apparently people can have them and never know it. The p-ACC is when the corpus callosum, which is the the part of the brain that connects the left and right hemispheres of the brain, is partially developed. Kannon was also born with an extra toe (which was the only anomaly based on physical appearance). Honestly we think it's the cutest little trademark about him. The heart ultrasound showed that he had a hole in his heart, which wasn't of too much concern, because a lot of premature babies will be born before the hole is closed up. We followed up with a cardiology appointment and in a few weeks, the hole had closed. After the findings in the hospital they immediately started genetic testing, and it was six weeks later that we found out he had Tetrasomy i5p. He spent 11 days in the NICU. Mainly that long because he had to pass certain tests before leaving. He had a hard time learning to swallow, but with occupational therapy and exercises, he was able to eat by bottle before leaving. He had to weigh at least 5 lbs before leaving, pass a carseat test (because he was so little), and no jaundice. We headed home and loved on our baby.
When Kannon was about a month and half old, we thought he might be having seizures. I recorded it and took it to Kannon's neurologist. She confirmed he was having them and that's when we started our ongoing battle with seizures. We have had routine brain MRI's which have shown Kannon's brain being a little "different" from the normal. Kannon's epilepsy is general, and focal. Which means he has seizures firing from the entire brain, and seizures firing in just one spot. This increases his chances of his seizures changing to different categories. For instance, he started with a type of seizure called myoclonic jerks, but today he has partial complex seizures. Most of them triggered by light stimulation (the sun, flickering lights, some lights on toys, etc). Kannon has a vagal nerve stimulator impanted just over his left shoulder, and he is on the Ketogenic Diet to help his seizures. He is also on 4 seizure medications throughout the day, and 2 emergency seizure medications. They help his seizures, definitely, but are they controlled? No, he has anywhere from 1-5 a day. And we have gone a handful of days where he hasn't had any. And those are some really good days! However, we have had some really trying days, when Kannon has seized too much and has caused him to lose some of his milestones. Like swallowing. Kannon has a Mickey Button (g-tube) now and that's his primary (only, really) route of eating. Other neurological problems have come about later in Kannon's life. Last May we found out his white matter is deteriorating and that his DNA doesn't have the protein that the brain needs to function and survive. That news was devestating, and still is when we dwell on it. Which is something we really try not to do. We thank God for each day we get to spend with him. We want to give Kannon the childhood he deserves, and live in the moment. One moment and one day at a time.
Kannon has scoliosis. We have been following with orthopedic Dr's since he was maybe 1 year old. We did some MRI's of his back when his scoliosis started to really progress pretty quickly. They found that Kannon had tethered cord. March of 2012 Kannon had his second surgery on his spinal cord, because they needed to release the cord from tethering. We hoped this would correct his scoliosis, because it often does. However, it did not. We tried bracing, the surgery, and none of that worked. Kannon's Dr's suggested VEPTR surgery. We ended up having that back surgery in January 2014, and he is recovered remarkably well. His scoliosis curve went from at 70 in a brace to a 45 without a brace. This allowed Kannon's lungs to ventilate better. Which brings me to my next point.
Kannon's lungs have always been great functionally. However it's been one of his biggest compromises at the same time. With Kannon's diagnosis, respiratory infections are a DOOZY. Kannon was hospitalized 9 times his first year for respiratory infections. The fact that Kannon can't swallow (very well), aspiration (fluid or food going to the lungs) has played a big role in pneumonias. On top of that, the scoliosis was getting so bad, that it was smashing his left lung. So when he got a cold, 90% of the time it would develop into pneumonia. And when he gets sick, he hits rock bottom FAST. He has no reserve in his lungs. Because Kannon has been sick so many times, his lungs are basically scarred (atelectasis) from the trauma. Which means his lungs aren't working to the abilities that they should be. This explains him being on oxygen fulltime now.
As far as medical issues, that is all we have gotten for Kannon. That isn't too much, right? ;)
As far as motor development, Kannon can't walk, talk, sit up, crawl, or hold up his head. He is in physical and occupational therapy to aid in all of these. With Kannon's back surgery, we are hoping that he can begin to build the strength to do all of these things one day. We always have hope that he can accomplish anything he (and we, since it's a team thing) put our mind to. He has a wheelchair, a gait trainer, a bath seat, and other positioning devices that aid him in being able to participate in activities, games, and mobility. Every day he learns something new, as do we! He loves playing his piano and adores the songs "Hokey Pokey" and "Wheels on the Bus".
As I said, it seems like A LOT, I'm sure. But this life we live is beyond amazing. The joy that you get when you see your child finally accomplish something that you have been working with them for countless hours or days (sometimes months or years) is unexplainable. We have learned how much the SMALLEST things matter the most. We have witnessed generosity that I never even knew existed in this world. People have left us money at our doorsteps, bought christmas gifts for Kannon and to our family, funded his equipment, random strangers have picked up our check at dinner, and an enormous amount of participation in fundraiser after fundraiser....it is an AMAZING, jaw-dropping, feeling to know that it isn't just us, the entire community has rallied behind us time and time again. People look at Kannon, and instantly fall in love. When Kannon was first born, the Dr's and everyone in that room knew they had been entirely wrong. As soon as the Dr. saw him he told me "he's perfect"....and he is. This journey has made our faith unshakable. I believe whole heartedly that God put Kannon in our lives for a reason. He is our miracle, and we wouldn't change one single thing about him.
"Faith is being sure of what we hope for and certain of what we do not see" Hebrews 11:1
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