WYATT & IZZY
Wyatt was born on April 15th, 2003. He was a very small baby, weighing in at 6 lbs; and as any mother would tell you, he stole hearts from the very beginning. He started walking before he crawled and was a very happy baby.
Wyatt has faced many challenges in his young life, starting with the divorce of his parents when he was 6 months old. We moved from the country to the thriving DFW area. As they say, when one door closes, another one opens – you just have to be looking for it.
Wyatt struggled some during his toddler years. He had an enlarged spleen when he was a year old. After several blood tests the doctor decided that he probably had had mono. Of course we know now that is not what it was. When Wyatt was 2 ½ he was hospitalized for the first time with pneumonia.
When Wyatt was 2, the man who would become his “real” dad, Kevin, came into our lives, bringing his future big brother Nick with him. Our family moved to Grapevine, TX, and when Wyatt was 5, he was officially adopted by Kevin.
In Kindergarten, our “Peanut” was diagnosed with Borderline Intellectual Processing and ADHD. The psychologist noted that he had difficulty remembering things, which affected his ability to learn. He also had blank spells and it was discussed that he might be having focal seizures. An EEG ruled them out at the time. He played football in First Grade. He had spent 3 years going to see his brother practice and play, and now it was finally his turn. He loved it! Then the following summer the pediatrician noted that Wyatt had an enlarged spleen, so no contact sports were allowed any longer. After more blood work and a visit with the hematologist, there was no good explanation for his health problems. School continued to get more difficult, and Wyatt started to act out. He started falling down without any warning, but it was more than just clumsiness. In January during 3rd grade he had pneumonia again and was in the hospital when he met his current neurologist Dr. Kelfer at Cook Children’s. Dr. Kelfer saw him “fall” and knew that it was cataplexy, a sudden loss of all muscle tone often brought on by laughter. An MRI was done to help determine what was causing the cataplexy, and it showed that Wyatt had an abnormal brain image. He had atrophy in his temporal lobe, which is where the cognitive functioning occurs in the brain, finally explaining why school has been so difficult, and he had immature white matter, which explained the delays seen with his fine motor skills. Since he had not had a previous MRI there were discussions if it could be degenerative or not, so he had another MRI 6 months later to find out that there was no notable change.
During the 6 months he met a narcolepsy specialist because cataplexy is most often related to narcolepsy; unfortunately during the sleep study they determined that he has sleep apnea and narcolepsy cannot be diagnosed when there is another sleep disorder. This 6 months span included the summer of 2012, and another neuropsychological evaluation, which officially diagnosed Wyatt with Autism and showed significant cognitive decline from the first one after Kindergarten. We latched on to this diagnosis and started working with therapists and towards goals that we could understand. Then in August of 2012, Wyatt had his first grand mal seizure. He slept afterwards for a few hours, but almost as soon as he woke up he had another seizure. He was taken to Cook Childrens Hospital in Ft. Worth. Wyatt started anti- seizure medications and was released to go home. For the next few months Wyatt had many seizures and lots of cataplexy. Medication was changed numerous times because each medicine tried would work for a few weeks and then stop working. Some days he would have 6 to 10 seizures a day. The doctor kept doing more and more labwork and he took the video EEG that was done while in the hospital to conferences. In October of 2012, Dr. Kelfer brought Wyatt in for a weekend in the hospital Epilepsy Monitoring Unit. He was having not only grand mal convulsive seizures, but also focal and absence seizures; more than 25 in a 24 hour period. Finally someone mentioned a condition where all the pieces fit. In February of 2013 Wyatt had his final diagnosis after a blood test confirmed he had Niemann-Pick Type C, or NPC. NPC is a progressive, degenerative genetic disease that is caused by problems with cholesterol storage in the body and brain. Researchers are working on a cure now but so far, no one has survived this fatal disease. More can be learned about NPC by going here: www.nnpdf.org.
Wyatt has declined very quickly over the last year. He started to get upset after the seizures and after the cataplexy attacks. He is no longer able to play football or soccer, and cannot swim by himself. He wears a helmet so that if he falls he does not hurt his head. He is no longer able to be alone and has someone with him all the time to catch him or to remind him that that strange feeling means he needs to go to the bathroom and does not have to be upset. He gets exhausted very easily and has a wheelchair now. He does not have to use it all the time, but does use it when there will be more than about 15 minutes of walking. He aspirates on thin liquids, and is a higher risk now for pneumonia because the aspiration is the fluid going into his lungs. Wyatt also has great difficulty expressing himself now with speech, but we are with him enough to guess what he wants.
A great friend, Madison’s mom, mentioned the awesome things that today’s service dogs are able to help with. We decided that a service dog was exactly what Wyatt needed—a constant companion to comfort him when he needs it, and to help break down the barriers with other kids. A service dog would also be able to alert us when Wyatt needs help, like when he has a seizure at night, or is choking. A service dog can even go and stay with Wyatt in the hospital. The ball is rolling, and through the amazing support of family, friends, the community, and many strangers along the way, Wyatt’s Sidekick Izzy is in training to be Wyatt’s best friend.
In spite of all we are dealing with, we recognize each day as a blessing. God has a plan for us even if we do not know what that plan is. Through all of the tests, medication changes, and subsequent emotional changes that come with them, we are confident that Izzy will be here for Wyatt and our family, and she will help us keep Wyatt healthy and comfortable as long as possible.