Newspaper article The Florida Times Union

Stroke Survivor's Family Takes Up Cause; Their Goal: To Raise Awareness, Get Help for Others in Similar Situation

Newspaper article The Florida Times Union

Stroke Survivor's Family Takes Up Cause; Their Goal: To Raise Awareness, Get Help for Others in Similar Situation

Article excerpt

Byline: Beth Reese Cravey

When Aulani Frison was 8 months old, her family noticed she was weaker on her left side than her right side.

Tests showed she apparently suffered a stroke before or at birth. She was diagnosed with hemiplegia, a type of cerebral palsy that results from damage to the part of the brain that controls muscle movements, as well as epilepsy.

Her mother, Daria Furqan, and grandparents, Donna and Hisham Furqan, all of Jacksonville, were told she might never walk or talk.

Aulani, now 3, can walk and speak in full sentences.

She is in a special-needs class at Biscayne Elementary School, attends weekly speech, physical and occupational therapy and has regular checkups with specialists. Since she was born, her mother and grandparents have researched how to help her progress, connecting with the Arlington, Texas-based Children's Hemiplegia and Stroke Association.

To their consternation, they found no local support groups or resources for child stroke survivors or their families.

"Jacksonville recognizes adult survivors and has several groups ... but all for adult populations over the age of 18. Other cities and states rally to bring awareness to the community when it comes to youth stroke survivors," said Donna Furqan, who contacted the Times-Union for help. "My hope is that Aulani's story will bring awareness to others that children do have strokes and they need our support. ... Their parents need our love and support as well."

The family would love to meet other parents and grandparents who are raising child stroke survivors, to compare notes, offer and seek advice, share challenges and successes, she said.

"There are no connections here. There is no support for Daria," she said. "I hear [the need for it] in her voice."

Daria Furqan said there also should be local play groups for child stroke survivors. "I would like to see more things offered for parents and kids," she said.

A new support website may lead to the formation of local support and play groups, said Lisa Craig, communications director of the American Heart Association for the First Coast, Tallahassee and Valdosta, Ga., areas. The American Stroke Association is a division of the Heart Association.

The website - heart.org/supportnetwork - has a pediatric stroke section and offers news, expert blogs and chats for parents and family members to exchange information. Hopefully, enough Northeast Florida people will connect on the website to form a support group, she said.

The Support Network offers a monitored online community, as well as materials for starting face-to-face community-based support groups. The online community offers people a place to ask questions, share concerns or fears, provide helpful tips and find encouragement and inspiration, according to the association. …

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