Help CP was born out of the obstacles and challenges faced by Troy (our son) and his family (us :)). Our story begins a long time ago. When our first child was conceived, we were overjoyed! But just like all new parents, we were also just a tad frightened at the thought of becoming parents. At the age of 27, we still were not sure how we were going to conquer this particular task:). However, our little one was determined to make a dazzling entrance into this world and just could not wait to meet us. Quite abruptly, and without warning, our little guy had ruptured his mucous membrane and was ready to exit at only 33 weeks gestation. Well, my dear husband rushed me to the hospital and my doctor quickly scheduled an emergency cesarean section as baby was still in the breech position. And ta-da! There he was, cute as a button, but not quite ready to function on his own.
We had two weeks of uncertainty and scares while he was in the neonatal intensive care unit, as he was a restless little guy and did not like to be on his life-assisting equipment. However, the next two weeks were filled with kangaroo care, wonderful feeding sessions, and even his first bath! Shortly thereafter, he was sent home, healthy and strong and continued this way until after his first birthday. Shortly after he turned one, he started cruising around furniture and we thought for surely he would be walking any day. However, at his 15 month check-up he still was not walking and his pediatrician referred us for an evaluation by the early intervention program. He was evaluated and began receiving speech and physical therapy. We were hopeful that our son would grow out of this phase. Troy was referred to a physiatrist (a physical rehabilitation doctor) for leg braces at almost 2 years of age and at the time we were told that he might never be able to walk. We were devastated. He had several issues to overcome if he was ever to walk; severe scissoring from heavy spasticity in his legs, abnormal bone development, and harder to fix issues with his balance. Needles to say, we were amazed and filled with gratitude when he got his first set of AFO/SMO braces with twister cables attached and he was finally able to walk!
Shortly before this time he was officially given the diagnosis of cerebral palsy along with developmental delay. As a family we had lots of mixed emotions surrounding this diagnosis. We were ecstatic for all the skills he already had and the obstacles he had already overcome. We truly felt that he was a living, walking little miracle baby who held an infinite amount of ability and possibility. This gave us so much hope. However, we were also scared about what the future would hold for him and how we were going to provide the care that he so desperately needed in order to keep progressing, developing, and overcoming obstacles. Fortunately for us, our therapy team at the Early Steps Intervention program was amazing and Troy continued to meet his goals session after session until he finally started using a few words at age 3. This joy and sense of accomplishment was quickly overcast with the reality of our financial situation. See, here in the state of Florida, the early intervention programs end at age 3. And like many other families, our major medical insurance only covers a small amount of therapy visits for the year, without credits for cash paid out of pocket (as if we could afford it:). It was quite a dilemma to be in as parents. It left us feeling sad and mourning the lost opportunity for our son. Then, it made me angry. It made me so angry that he was going to miss out on being able to experience the basic life events that we all take for grantedbecause we were financially unable to provide much needed therapy for him! It all seemed so unfair. I started looking for answers and after a few months of hard work, letter writing to the Governor, and working with numerous social service agencies I found a few solutions in the form of a special health insurance policy. However, there are still many proven effective therapies that are not covered even with a health insurance policy geared for special needs children. These are also therapies that have given other children the ability to heal and walk when they could not before. Although we have made it so far, we still feel there is a long way to go.
Troy is 6 years old now, walking well (still with his fabulous braces due to severe toe walking and in-toeing, spasticity) and talking like nobody's business! Unfortunately, he has 4 sets of braces to wear and most of them cause pain and sore spots on his feet and legs. He has AFO/SMO with twister cables attached, night splints, and a SWASH brace (for his hips) also to wear at night. He still has severe spasticity in his legs and we would like to help him walk without his braces! It is our hope to provide him with hyperbaric oxygen treatments and ABM (Anat Baniel Method) therapy sessions over the next 12 months. It is so amazing for all of us to witness the transformation of this little butterfly. His face lights up with excitement each time he conquers a new skill that he has been working so hard to acquire. We are ready to see what other miracles he has in store.