When you think about it, it’s the simple things in life that are often taken for granted.
A stroll through the park. Feeling hot sand between your toes on the beach. Getting out of bed to start your day.
For Alysha Marerro, 15, these routine actions are anything but.
Alysha was born with spina bifida, a congenital defect of the spine in which part of the spinal cord is exposed.
She never had any feeling from the waist down. A wheelchair became her best friend.
Alysha, who lives in Lake Worth with her mom, twin sister and younger brother, also has hydrocephalus, where fluid accumulates in the brain, enlarging the head and sometimes causing brain damage.
As if that wasn’t enough, at age 4, Alyshawas diagnosed with scoliosis, an abnormal curvature of the spine.
She’s had five major surgeries, more than any young child should ever have to endure.
“It’s been hard,” Alysha says barely above a whisper. “I can’t do the things everybody else does.”
That changed just a little bit this past week when a $1,900 transfer lift chair was donated to Alysha by Project Access, a Palm Beach Medical Society program started in 2005 that offers health care to low-income families.
The American Association of Caregiving Youth connected Alysha’s family to the medical society.
“This chair will allow Alysha to be more of an every-day teenager,” said Lauren Stoops, the project’s director.
The chair will make it easier for Alysha’s family to get her in and out of a car or bed. The family has to work together to move Alysha, an eighth-grader at Tradewinds Middle School in Greenacres, from her wheelchair to the shower or to wherever she needs to go.
If there is only one person around, that means Alysha must stay put until someone else comes home.
“I’ve asked God to forgive me because there are times when I say, ‘I can’t do this anymore,” says Marisol Rodriguez, Alysha’s mom. “It’s very hard, especially because she’s a twin. Imagine me taking her sister to The Rapids and then I have to say to Alysha, you can’t come. That breaks my heart.”
Rodriguez, a 51-year-old single, stay-at-home mom, says caring for a child with the kind of disabilities Alysha has is physically and mentally draining.
“I cry, I pray, I just take it one day at a time,” she says. “I lock myself in a room sometimes, but I don’t know of anyone who can take care of Alysha the way I can.”
The lift chair is a big help.
Often, Rodriquez, who only stands 5-feet-tall, has carried Alysha on her back. But as her daughter has grown — Alysha weighs 150 pounds — that’s no longer possible.
“When you have the kind of disability she has, it doubles the weight,” Rodriguez says. “With the chair, I can transfer her from the bed to anywhere in the house. I don’t have to lift her at all.”
Alysha calls the chair, which can hold up to 220 pounds, “awesome.”
“I can go places more and hang out with friends,” she says. “Before, life was boring because I couldn’t really do anything.”
Alysha tries to be as normal as possible. Her favorite subject is science, mostly because she likes to do experiments.
That subject will come in handy as Alysha gets older. Her dream is to become a doctor.
“I want to help people like myself,” she says.