Moms of children with PWS raise support for rare disorder

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PWS - PraderWilli syndrome
Photo by WINK News.

Two local mothers who are raising children with rare disorders are also raising money to find a cure.

Estero mothers Claribel Bocanegra and Amanda Tokarsi both have children growing up with Prader-Willi syndrome. PWS involves weak muscles, slow development and a feeling of constant hunger.

“We hope to bring awareness to the community,” Bocanegra  said. “And to know that we have a community that supports us means a lot.”

These women are on a personal mission to help everyone who is affected the way they are.

“It’s not easy for me because I’m different from people at my school,” Isabella Bocanegra said.

It’s difficult for Isabella to enjoy any meal because no matter how much this 16-year-old eats, her body tells her she’s still starving.

“PWS is a disorder where I eat a lot, and I don’t control my food,” Isabella said.

Bocanegra says her daughter’s battle against PWS began the day she was born.

“Knowing that your child is always gonna be hungry, and that she’s gonna need to be supervised for the rest of her life, it’s heartbreaking to some point,” Bocanegra said.

While it breaks Bocanegra’s heart to have to bolt her refrigerator shut, it’s a painful struggle she knows other families also deal with.

“Both of our girls are on humane growth hormone injections,” Tokarski said. “Having a diagnosis of PWS or any rare syndrome is so isolating and scary.”

So Tokarski and Bocanegra joined families like theirs to raise support and money for a cure through their inaugural fundraiser.

“The research and everything going on through the PWS foundation is amazing,” Tokarski  said. “Claire (Tokarski’s duaghter) is actually involved in a study right now.”

Their first major fundraising event is called “One SMALL Step” for PWS. It will bring local businesses, entertainment and food to Estero, and people are invited to take to attend the event Sunday, Feb. 17. Parking and attendance are free. Any money raised will go toward research and treatment for PWS.

For more information visit their website, Facebook page, or contact Tokarski at Tokarski.Amanda@gmail.com.

 

 

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