Published: Oct 20, 2012 06:00 PM
Modified: Oct 17, 2012 11:12 AM
Brady Chan met all of his developmental milestones the first six months of his life. Parents Mimi and Kevin moved the family to Cary when Brady was 5 months old, and they had no reason to suspect he was different from any other baby.
But by the time Brady was 9 months, the Chans knew something was wrong. Brady wasn’t trying to crawl, and he wasn’t able to do many of the things babies his age should be able to.
About a year later, Mimi and her mother took Brady to China, where a doctor at Beijing Children’s Hospital offered a diagnosis within 10 minutes: spinal muscular atrophy (SMA).
Mimi and Kevin were crushed. But they started learning everything they could about the genetic disease that causes muscle weakness. It is the No. 1 genetic killer of children under 2; one in 40 people is a genetic carrier of SMA; and one in 6,000 babies is born with SMA
Brady is now 2, and the Chans want to help find a cure. On Nov. 2, the RTP chapter of the National Association of Asian American Professionals is hosting a Love, Hope & Strength fundraiser in support of the family. Q: What do you hope to accomplish through the fundraiser?
It took 12 months for us to get a diagnosis, and during that time, Brady lost several of his abilities that he’ll never get back. This disease is one that deteriorates muscles; if you don’t use it, you lose it. And over time, the muscles get weaker. Later in his childhood, Brady may very possibly lose the ability to swallow and breathe independently.
I hope to educate pediatricians in our area about SMA. And I want parents to know to advocate for their child. You know your child better than anyone. Push your doctors to go deeper, to find out what is wrong before valuable time is lost. Q: How will the money that is raised be used?
The money will go to Families of SMA (FSMA), and it will fund the research effort and help the families.
When Brady was first diagnosed, FSMA sent us a care package full of toys that kids with SMA can enjoy.
We also attended the FSMA annual conference in June; it was held in Minnesota. As a newly diagnosed family, we were able to talk to other families and listen to researchers; they are very close to a major breakthrough.
I really hope we can spread awareness among the medical community. Geneticists, neurologists, pediatricians, physical therapists, occupational therapists, speech therapists – all of them need to know what to look for. Q: How is Brady doing now?
He is the sweetest little boy! He laughs all the time, and he loves to hug. At age 2, he is mastering puzzles and games that only 3-year-olds usually get.
But I feel guilty. As a stay-at-home mom before Brady’s diagnosis, I let some of his physical therapy slide for a two-week period when my in-laws were visiting. Brady lost many of his abilities in two weeks; he lost his ability to roll over, to lift his legs, to raise his arms. … He must work out every day.
And we didn’t know how critical these exercises were, because we didn’t yet know what was wrong. Q: Has the process made your family stronger?
It makes us realize what is so important about family. My dad is an inventor at heart. We saw a Radio Flyer-style wagon that was a baby wheelchair at the June conference; it was $1,000. We told my dad about it, and less than a week later, my dad had made a baby wheelchair.
He has also made an adaptive tricycle. We strap Brady’s feet into the sandals, which are strapped to the pedals, and we push him from behind; it helps him maintain his strength.
We are in the process of applying to get him a power wheelchair, and my parents have moved to Raleigh to help us. Something like this can either break a family or make it stronger. We are very fortunate.
But I don’t want any other family to go through what we did.