Five years ago, our son Isaac was diagnosed with SMA Type 1. He was four months old, and I remember talking to my family about the implications of the diagnosis. We went from coming to terms with the knowledge that Isaac would likely spend his life in a wheelchair to realizing that his prognosis was much worse than “he’ll never walk.” He would not sit. He would not eat. He would not swallow, speak, turn his head, move his hands. He would not breathe on his own. He would not likely live to see his first birthday. There was no cure. There was no treatment. All the while, he would be the sweetest, happiest, brightest little boy. We were devastated, and, even today, that word does not capture what we really felt. We prayed he would live long enough for his older sister to remember him. We prayed that when his time came, we would all be there with him.
But Isaac did live to his first birthday, and then to his second. He loved reading books and playing with switch activated toys, coloring with his sister and swimming with his daddy. He started vocalizing to communicate, and talking and playing with his eye gaze activated communication device. Fast forward to his third birthday, a few months after the FDA approval of the first treatment for Spinal Muscular Atrophy (SMA). We knew it would not be a cure, but we hoped it would keep him from losing what strength he still had. Isaac received his first doses of the drug and promptly started turning and nodding his head. He gained strength in his extremities. He started working with his physical and occupational therapists to sit upright with support and to operate a joystick. As he outgrew his medical stroller, we started talking about a power chair. All of his physicians and therapists agreed that he could manage it, that it would benefit him, and his friends at school started getting excited to race him on the playground!
When he was three and a half years old, Isaac completed his first power chair trial at NuMotion. He was amazing! We knew the insurance process would be long. Since we had such good experiences with his Medicaid in the past, we were not overly concerned. We celebrated Isaac’s fourth birthday. NuMotion provided Medicaid with additional information. Medicaid was slow to respond. Finally, more than a year after his initial trial, Medicaid officially denied Isaac’s power chair. The only problem was that they never told us. We waited and waited for a reply from Medicaid, and finally we reached out to CCDC for help. CCDC Non-Attorney certified advocate and graduate student intern, Nicole Bishop, was assigned to our case, and from the very start, I knew we were in good hands. She was completing her internship and had additional support from what seemed like the entire CCDC staff. I remember that it was around Christmas time when we started the appeal process, and Nicole had some serious digging to do. She discovered that the chair had been denied, and then she filed for improper notice of denial. We celebrated Isaac’s fifth birthday, then we set a date for the court hearing. We began gathering evidence that Isaac could drive the chair, and that he would be able to drive it in all of the needed environments. NuMotion bent over backward to get Isaac a demo chair for us to take home for a weekend. We took so many videos of him driving!
When we had about a week left to gather documents and evidence and compile a witness list, Nicole called the court to verify the best format for submitting the videos. Late that Monday afternoon, she learned that, since we were sending videos, the court would really like all of the materials by Wednesday. Nicole and I allowed ourselves a moment of panic, but then we put our heads down and pushed on. I spent the night editing videos and sending pleading emails to Isaac’s medical team for them to rush their letters of support by the next day instead of the next week. Every single one of them responded with the letter, some of them arriving in my inbox after midnight. The next morning, as I sent Nicole yet another email (seriously, you should see the chains we had going), I noticed that her last email to me had been sent at 4:30 a.m. She had stayed up all night, literally, to prepare Isaac’s case. I was overcome with gratitude at the lengths people would go to in order to help Isaac. And we did it, we submitted everything in time! Then we waited.
Just as Nicole was starting to prepare all of the witnesses for the court hearing, we heard the best news. I opened my email, and there, in the subject line, “We won!” I opened the email, read it twice, and screamed! I ran to Isaac and told him that he was getting his power chair. He shrieked with joy, his sister shrieked with joy. My husband came in to ask what was going on, and he sighed with such relief. I cried when I heard that two other children had their chairs approved along with Isaac. We would not have to go to court because the evidence we had gathered was enough to convince Medicaid that Isaac could and should drive a power chair. Nicole, and her mentors at CCDC, were exactly who we needed to help Isaac get his chair, and for the first time in his life, a measure of independence.
This past week, we went to pick up Isaac’s power chair. It is his favorite color, bright orange. He is practicing every day so that he can safely drive it independently. We can’t wait to see where it takes him!