Shawn Santos struggles to pick up her 5-year-old daughter, Brooklynn, like the princesses that decorate her pink and purple room. But, Brooklyn can barely wrap her weak arms around her mother’s neck.
She can’t walk.
She’s dead weight.
“It’s horrible,” Shawn says. “There’s days when she’s happy. But, there’s days when she wants to walk.”
Brooklyn has spinal muscular atrophy, a genetic recessive disease that destroys the nerves that control voluntary muscle movement such as walking, head and neck control and even swallowing.
Brooklynn was diagnosed just 13 days before her first birthday. Shawn and her husband, Jayson, have to lift Brooklynn from her wheelchair to do any number of tasks — from sleeping to taking a bath.
Their backs ache.
And she’s not getting any smaller.
A number of renovations need to be done to the house to make it more comfortable for Brooklynn and her family, Shawn says as she lifts Brooklyn onto her colorful bedspread. Brooklynn sits with her legs crossed. But, it isn’t long before she loses balance and falls over onto the soft pillows.
The family will be holding a fundraiser for her medical fund from 5 to 10 p.m. Sept. 7, at Christ Community Church, in Brandon. After meeting with Brooklynn, The Noise Box, a non-profit, has organized a local band lineup to perform.
The family wants to widen the door to her room with the money from the fundraiser. It has become almost too narrow for her motorized wheelchair. There’s a speed limit for inside — speed 2. But, she still bumps into things, including her doorway.
They want to redo the bathroom sink and bath so she has access to the facilities.
The family also is drowning in incessant medical bills. They don’t get any help from Medicaid or Social Security.
“It’s just difficult, because you don’t know what her future is going to bring,” Shawn says. “You don’t know what she’s going to need. Financially, it’s a toll for us and, emotionally, it just messes with your head.”
DIAGNOSIS
Like most parents, Jayson and Shawn were excited for the birth of their first child. They called the unborn baby girl their “little dancer,” because of her active kicking and turning during the pregnancy.
When she was about 6 months old, her parents notice she was not meeting her milestones.
Brooklynn had a weak cough. Her vertebrae were constantly popping. And, she didn’t happily bounce up and down on laps.
Jayson and Shawn took Brooklynn to the doctor repeatedly, each time being turned away with a different excuse.
“She’s just lazy,” Jayson says about just one of many explanations. “That’s my favorite one.”
Soon, Brooklynn’s balance began to deteriorate. Her family had to prop pillows around her so she could sit up. She never learned to crawl, instead rolling around the floor as a way to get around.
Finally, at 9 months old, a doctor sent them to a neurologist, after acknowledging Brooklynn had low muscle density.
Through a series of tests, the neurologist confirmed the diagnosis — SMA. Three simple letters that shattered the family’s world.
“It was horrible,” Shawn says. “You have all these hopes and dreams for your child, and they were just ripped away.”
“The first thing [the doctor] said was, ‘Don’t look on the Internet,’” Jayson says. “Even as a child, if you’re told don’t do something, you’re going to do it. Especially something that’s negative.”
Word such as “fatal,” “feeding tube” and “tremors” haunted the couple.
Originally, Brooklynn was diagnosed with Type I SMA, which usually is fatal within two years. After more tests and opinions, Brooklynn’s diagnosis was change to Type II. With Type II SMA, 75% of those affected live to the age of 25. Type II SMA patients often are able to sit independently when placed in a sitting position but eventually lose this ability by their mid-teens.
With a little more hope, the family pushed on, ready to embrace their new journey.
LITTLE MERMAID
Through it all, Brooklynn’s spirit remains unbroken. She’s as feisty as any little girl about to go into kindergarten, with unique experiences to prove it.
Brooklyn has been driving since she was 17 months old — in her wheelchair. She also has performed in “Aladdin” as a belly dancer and even takes voice lessons and participated in an acting camp.
Although a serious bout with pneumonia landed her in the hospital twice last summer, she prefers to remember the more exciting things — an ambulance ride with her “mama,” and her dad bringing every stuffed animal she owned to her hospital room.
Even her land and aqua therapy at True Blue Therapy doesn’t seem to bother her.
“I like the water therapy, because I go in the water by myself with my goggles,” Brooklynn says.
Once known as the little dancer, Brooklynn is now the family’s little mermaid, like her favorite Disney princess, Ariel. She loves playing with her friends in the pool and going to the beach.
The Santoses pack a wheelchair ramp with them every time they leave the house. But, it can only reach five stairs.
“Patience,” Jayson says about getting through the tough times. “A lot of communication. Teamwork.”
RAISING AWARENESS
Not many kids have their own business card.
Brooklynn’s is polka-dotted pink and orange.
Her title: Local Ambassador for the Muscular Dystrophy Association.
Her job responsibilities: making appearances at Lowe’s Shamrock drive, MDA events and raising awareness for the disease.
Her parents also have been active raising awareness and teaching others about SMA.
“We’re their voice,” Shawn says. “As time goes on, hopefully, people will start to speak out more and bring awareness.
“I think that’s the key — to make your child not scared of their illness,” he says.
Contact Amber Jurgensen at ajurgensen@plantcityobserver.com.
BROOKLYNN SANTOS FUNDRAISER
WHEN: 5 to 10 p.m., Sept. 7
WHERE: Christ Community Church, 1310 John Moore Rd. Brandon, 33511
COST: $4 in advance, $6 at the door. Sponsorship is a minimum of $10.
DETAILS: There will be concessions, raffles, a bake sale and a concert featuring six local bands.
CONTACT: Shawn, (813) 495-1045, or Jayson, (813) 784-2657