Wish Book

Wish Book: Bella’s family needs special bathtub lift

Claudia Rabinowitz and her husband struggle physically to get their 8-year-old daughter, Isabella, around the house. Isabella has Rett Syndrome, a neurodevelopmental disorder that causes seizures and affects motor skills, speech and the ability to walk. Isabella is 8 and weighs 94 pounds. Mom is a cancer survivor and is recovering from complications of a double mastectomy, and dad is a nurse who works 12-hour shifts three days a week. This is outside their home in Coconut Creek on Thursday, October 30, 2014.
Claudia Rabinowitz and her husband struggle physically to get their 8-year-old daughter, Isabella, around the house. Isabella has Rett Syndrome, a neurodevelopmental disorder that causes seizures and affects motor skills, speech and the ability to walk. Isabella is 8 and weighs 94 pounds. Mom is a cancer survivor and is recovering from complications of a double mastectomy, and dad is a nurse who works 12-hour shifts three days a week. This is outside their home in Coconut Creek on Thursday, October 30, 2014. MIAMI HERALD STAFF

Claudia and Lawrence Rabinowitz do everything they can for their little girl, Isabella.

They dress her, feed her, bathe her, and fight for her future, none of which she can do for herself. And for the things that are out of their control — like a cure for their daughter — they pray.

At about 18 months, after the couple adopted “Bella” from Guatemala and brought her to South Florida, she was diagnosed with Rett syndrome, a rare neurological disorder that has robbed her of basic motor and mental functions.

First it stole her ability to grasp her toys. Then a babbling baby who could say “dada” and “mama” went silent. Next came the seizures.

“We were devastated,” said Claudia, 42. “But we keep going and fight for her, and we’re doing our best to give her the best life we can give her. It’s been a really tough road.”

It’s one they’ve traveled together, for more than eight years.

When the Coconut Creek couple adopted Bella, Claudia had recently been diagnosed with ovarian cancer and undergone major surgery. The operation left her unable to bear children — a blow to a young couple with dreams of raising a family.

Claudia and Lawrence decided to adopt, and turned to Guatemala to avoid the long waits that greet hopeful couples in the U.S. They were introduced to Bella, a tiny infant, whose pictures Claudia would gaze at while anxiously awaiting their union.

When she arrived, she was their blessing. She still is, though no one had an inkling of how challenging life would be.

Today, Bella weighs 94 pounds, and in some ways is not unlike the baby who came over from Central America. Her mother smiles and says she’s “a 1-year-old trapped in an 81/2-year-old’s body.”

She loves chicken, macaroni and cheese and burgers when they’re cut up and fed to her, and enjoys the cartoon character Dora the Explorer. She hates red sauce. And if she likes you, she’ll touch her clenched hands to your face, or even give you sudden “besitos,” or little kisses.

At night, when Bella’s hand-wringing calms, she opens her arms wide for hugs and snuggles on her daddy’s chest, or falls asleep next to her mommy for what little slumber her body will allow.

“We adore those moments,” Claudia says from her living room, while Isabella watches Mickey Mouse Clubhouse.

It’s at night, when her daughter can’t see, that Claudia says she sometimes allows herself to cry a little.

But when she’s with her daughter, Claudia is eternally cheerful, says Beckie Schwartz, an advocate with the Family Network on Disabilities of Broward County, which nominated the Rabinowitz family for Miami Herald Wish Book. Schwartz met the family at Bella’s Broward County elementary school, where her son is also a student. She is now helping the couple push for an individual aide at school following a scary fall last year.

“There is such love in her eyes for her daughter. The fact that she has a disability you’d never see it on the mother or father’s face like it’s an inconvenience or a problem. They love her,” said Schwartz. “You can see in their eyes their child is absolutely perfect for them.”

Bella loves her parents, too, and speaks to them with her eyes, which remain sharp. She makes them proud with her accomplishments, like learning once again how to walk with a wide gait following surgery to her legs at the age of 4.

On a rainy, December afternoon, Claudia can see that Bella’s new medication to fight a sudden bout of seizures is making her uncomfortable, and so she gently grasps her hands and coaxes her out of her chair. They walk slowly in a circle in a living room that smells of incense, where stacks of diapers and latex gloves line the wall. They are almost dancing.

The family’s life is happy, but hard and often stressful. Lawrence is upstairs when a reporter visits and doesn’t come down.

“It’s been difficult for him,” says Claudia.

One of the family’s greatest difficulties is simply moving around with Bella, who falls easily. A mechanical lift mounted on a winding staircase helps Bella get upstairs to her bedroom and bathroom. But bathing her is difficult. Claudia, who doesn’t weigh much more than her daughter, says it sometimes takes three people to get Bella out of the specially built tub, and Lawrence, a nurse for Baptist Health, works long hours, and when he is home has trouble lifting because of a neck injury.

Claudia is hoping for a reclining disabled bath lift chair, which she said Medicaid won’t pay for.

But she’d settle for raising awareness of Rett syndrome, which is diagnosed in just about one in every 10,000 girls. Claudia says there is promising research for a cure, and she’s hopeful one will come down the road.

Until then, she prays and enjoys the little moments her family shares together, even if life is hard.

“That doesn’t mean it stops us from living,” she said.

How to help

Wish Book is trying to help hundreds of families in need this year.

▪ To donate, pay securely at MiamiHerald.com/wishbook

▪ To give via your mobile phone, text WISH to 41444

▪ For information, call 305-376-2906 or email wishbook@MiamiHerald.com

▪ Most requested items: laptops and tablets for school, furniture, accessible vans

Read more at Miami Herald.com/wishbook

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