Brooklynn's Story
Brooklynn Rae birth to 2 years old
We waited a long time for Brooklynn Rae Santos. Our little angel arrived on March 1, 2008 at a healthy 8lbs 11 oz and 21" long. A few months along we realized she wasn't reaching her milestones like her playmates were.
Insistent about our concerns we finally were referred to a pediatric neurologist. It was on February 17, 2009, just 13 days before her 1st birthday Brooklynn was diagnosed with a relatively unknown genetic neuromuscular disease called Spinal Muscular Atrophy (SMA).
SMA is an inherited disease that destroys the nerve cells called motor neurons which control voluntary movements such as crawling, walking, head and neck control and also swallowing.
Brooklynn has daily physical and massage therapy with Mommy and weekly physical therapy treatments with her therapist, monthly blood tests for the experimental treatment of Valproic Acid and Carnitine-to watch for liver damage, and many Pediatrician, Neurologist, Orthopedic and Pulmonologists visits. Having caught the flu, in March, she obtained her first medical suction machine to help draw out the mucous as she is unable to cough strongly enough to break it up on her own. A cough assist machine will also be necessary to help expand her lungs. Brooklynn is able to sit up once placed in the sitting position and has recently received her leg braces and stander from the Shriners Hospital. Soon she will be the in need of a power wheel chair-it will be wonderful to see her gain independence.
Brooklynn seems to be reacting positively to her therapies and surprises us every day with her ability. "A roll over is a great achievement"!! Although Valproic Acid and Carnitine remains "experimental" and not USDA approved yet we pray it is slowing the regression which scientists say it may.
There are many ways you can help us:
Raise SMA Awareness to your family, friends and physicians too.
Advocate to your Representatives in Congress and Senator to pass the pending legislation: "The SMA Treatment Acceleration Act-HR2149". ----Don't know who they are??? Go to www.Opencongress.org and click on the appropriate tab at he top of the page. At the top of the page you can keep in touch by contacting us, reading our blog for updates and too, offer your support.
Please know donations are heart fully accepted to provide the best care possible for our baby girl, Brooklynn Rae.
As Brooklynn out grows her equipment and needs to be replaced all will be donated to Families of SMA and Research
Brooklynn’s webpage! -- We need a cure for this devastating disease!!!
Thank you for visiting