Dylan's SMA/Birthday Fund
Organized by: Angela Chau
Dylan is a happy, bright three year old boy, and loves playing with his two big brothers. He also loves kisses from mommy, hugs from daddy, and both grandma's cooking. He goes to preschool, plays at the park, and loves to play with Stormtroopers, dinosaurs, puzzles and books.
But unlike his family and peers, Dylan can't walk.
Dylan was born a healthy 8 lbs. 10 oz, and was a typical healthy child. However, he never started walking and after meeting with two neurologists, he was diagnosed in 2014, right before his 2nd birthday, with Spinal Muscular Atrophy (SMA), Type 2. In the past year, Dylan has lost the ability to bear weight on his legs, crawl, and roll over. He frequently gets respiratory illnesses and has difficulty with recovering. However his spirit continues to thrive and he still loves life.
As we are learning, a child with SMA requires so much therapy as well as medical equipment that our family is not prepared financially to obtain. Insurance has helped some, but has also denied most of the equipment that he needs, so we have paid for some things out of pocket. They have denied a power wheelchair saying it is not medically necessary (we are appealing this decision). Accessible vans, bath chairs, and home modifications are also necessities not covered by insurance.
For Dylan's upcoming 4th birthday, we would like to ask for any donations you can spare to assist us in obtaining the necessary treatments (i.e. aquatic physical therapy) and medical equipment (i.e. bath chair, stair lift, ramps, possibly power wheelchair) not covered by our insurance. We are also in the market for a wheelchair accessible van so that when we can get a power wheelchair for Dylan, it will be much easier to transport it.
SMA (spinal muscular atrophy) 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.
SMA is caused by a mutation in the survival motor neuron gene 1 (SMN1). In a healthy person, this gene produces a protein that is critical to the function of the nerves that control our muscles. Without it, those nerve cells cannot properly function and eventually die, leading to debilitating and often fatal muscle weakness.
SMA affects approximately 1 in 10,000 babies, and about 1 in every 50 Americans is a genetic carrier. SMA can affect any race or gender.
There are four primary types of SMA—I, II, III, and IV—based on age of onset and highest physical milestone achieved.
Individuals with SMA have difficulty performing the basic functions of life, like breathing and swallowing. However, SMA does not affect a person’s ability to think, learn, and build relationships with others.
Though there is currently no approved treatment for SMA, there’s great reason for hope. We know what causes SMA and what we need to do to develop effective therapies, and we’re on the verge of major breakthroughs that will strengthen our children’s bodies, extend life, and eventually lead to a cure.
Dylan and our family are humbled that you are reading our story and are grateful for your generosity at any level. Thank you so much in advance for your support!