Family of 3-year-old stroke victim seeks Jacksonville support group: 'She's a little miracle'

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.

"The importance of mutual support among parents who share a common experience cannot be underestimated," said Pablo Saldana, manager of patient- and family-centered care at Nemours Children's Specialty Care in Jacksonville, which is leading Aulani's treatment.

"Parents of children with special health-care needs often face unique issues not experienced by other families," he said. "Sometimes hearing the firsthand experience of others who have traveled the same path is a powerful tool for coping. … The foundation of almost all support groups is the notion that, 'you are not alone.' "

Aulani and other children like her need the same foundation.

"It is empowering for a young person to learn they are not alone in whatever condition they might have. Support groups … provide an atmosphere to share, vent and laugh with peers rather than adults," Saldana said.

The predictions from Aulani's first doctor that she might never talk or walk are understandable, as are her ability to overcome those predictions, said her current doctor, Raj Sheth, neurology division chief at Nemours Children's Specialty Care.

"We do have a number of children with in-utero strokes that are able to walk, talk, see and much more. I can understand the difficulty of trying to predict how a newborn baby will grow and change five, 10, or 20 years down the road," he said.

Such children are "likely that they can develop deficits that present themselves visibly or cognitively," he said. "If a baby loses a large part of their brain, the brain's plasticity can help with some but not all function."

Aulani's family is optimistic she will continue to exceed expectations. In addition to the special-needs class, therapy and doctor visits, she wears glasses to improve her vision, a leg brace to improve her gate and medication to control seizures.

"She is a fighter," said Donna Furqan. "I'm praying that Aulani understands … that she's capable of doing the same as other children. She's a little miracle."

Beth Reese Cravey: (904) 359-4109