My name is Wade Hosey! I will be 2 on November 21, 2019. I was just diagnosed with Spinal Muscular Atrophy. SMA is a disease that robs people of physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to walk, eat, or breathe. It is the number one genetic cause of death for infants. There is a new treatment that can only be given before I turn 2 in just four months. This drug has a high success rate of stopping the progression of SMA, however, it is also the most expensive drug in the world being 2.1 million dollars for the 1 time injection.
My family was so excited the day I was born. A perfectly healthy baby boy… A gift from God.
At about 12 months old my family began to wonder when I would begin to walk, but I continued to develop normally in other ways. I was happy and always very loving. I loved playing with my cousins and other friends, who were starting to walk. I was crawling and cruising around furniture but not walking on my own.
My parents started to worry and began asking more questions at my checkup visits with the pediatrician. Everyone told my parents it takes some kids longer to walk, and not to worry. At around 18 months we began to desperately look for answers. I was enrolled in a physical therapy program to strengthen my legs and help with my walking and I took swim lessons (I love to swim!). My legs were weakening, and the doctors recommended genetic testing. It would cost $7200 and was not covered by insurance but we were desperate for answers.
The tests results confirmed my family’s fears that something was wrong. The test showed I have a disease called SMA (Spinal Muscular Atrophy Type 2).
We were immediately referred to Duke Children’s Hospital. The Specialist told my family I may live a normal life but, without treatment, I may never be able to walk and will be wheelchair bound. In addition to losing strength in my muscles, I can develop major respiratory issues, that could even make it difficult to breath on my own without the help of a respirator.
Spinal Muscular Atrophy (SMA) is a genetic disease passed down to the child when both parents are carriers. 1 in 50 people are carriers and 1 in 10,000 babies are affected. If a child is born with SMA the gene called 'Survival of Motor Neuron' is either missing or mutated. This gene produces a protein. If this protein isn’t produced in sufficient amounts, motor neurons die. Motor neurons are nerve cells in the spinal cord that send out nerve fibers to muscles throughout the body and control their movement.
Without the production of this protein, the muscles used for movement become weak and deteriorate.
Since being diagnosed with SMA, we have become more aware of some of the effects on my little body, such as tremors and my muscle weakness. The good news is SMA does not affect my ability to think, learn, and build relationships with those around me. I am very smart and I am beginning to talk. I am the sweetest, happiest baby! I am friendly and love interacting with people around me. I seem to have a keen sense of empathy and notice when others around me have walking difficulties and other physical problems. I watch with intent, concern and love. When I am around my friends and cousins and they are running and playing, I try very hard to fit in. I am so thankful for my cousins who love me just like I am!
There is a new life-saving therapy that costs $2.1 million called Zolgensma. This is a treatment for children with Spinal Muscular Atrophy. The treatment delivers a gene that sits beside the bad/missing gene and delivers the protein that is needed to help my muscles stay strong. There have been trials indicating a high success rate.
Zolgensma is delivered using the AAV9 virus. Most people build an immunity to this virus as they grow. Because I do not have any antibodies against this virus, I am still a candidate for this treatment. We must act quickly to secure the funding.
This drug is very expensive but it could save my life! I am very grateful for your help no matter how big or little you can share. Currently, my insurance does not cover this treatment.
Thank you for your prayers, love and concern.
- Tharmen Bala
- Trinity UMC Belhaven
- Ryal Watkins
- Paula Heckman
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