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Car show raises funds to fight rare disease
(by Erin Wick, staff writer - May 14, 2012)
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Messenger photo by Erin Wick
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Julianna Romine, center in purple, is pictured here with her family. Romine suffers from Prader-Willi Syndrome.
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Julianna Romine is in many ways typical of other little girls her age.
She loves to swim, draw, play board games with her three sisters and read aloud to her stuffed animals.
The 7-year-old Pickerington girl is incredibly sweet, affectionate and eager to please. She also possesses a spunky, independent personality that sometimes reveals an ornery stubborn streak.
But one thing makes Julianna very special - she has Prader-Willi Syndrome and her own non-profit organization, Julianna’s Wish, to help fight it.
She is the star of a May 19 fundraiser to help families with a PWS loved one and create community awareness of the condition.
Caused by a random chromosomal mutation that affects roughly one in 15,000 births, PWS is a non-hereditary genetic disorder. Associated symptoms vary in severity and include poor muscle development and function, a very slow metabolism paired with digestive complications, and cognitive, speech and motor skill impairments. Behavioral and psychological issues are often common.
Julianna, who was diagnosed with PWS when she was 8 months old, exhibits many of these symptoms. She receives two growth hormone shots daily to help increase muscle tone and to reach her potential height and weight.
With the help of her entire family, she must maintain a very strict diet of only 600 to 800 calories a day in carefully rationed portions of liquids and solids.
Julianna also has hip dysplasia and scoliosis, and will likely need a rod surgically inserted in her spine once she has finished growing.
She’s had several surgeries already, including a throat operation in April to help her better communicate.
Perhaps the most difficult and frustrating aspect of PWS is that it causes insatiable, relentless hunger and thus an extreme, life-long obsession with food, her family said.
However, the body’s ability to properly process food is compromised to the point that food can actually be lethal.
As Julianna’s mother, Dawn Romine, puts it, “Consider it an allergy. Julianna is allergic to food.”
While there is no known cure and no effective method to control the never-ending hunger, Julianna sees a team of specialists and receives multiple therapies to combat her PWS.
Dawn Romine notes there are many treatments Julianna could benefit from that are not covered by health insurance companies and since Julianna is generally healthy in spite of all her PWS complications, she fails to qualify for most types of funding assistance.
Navigating the system to get her daughter the care she needs has inspired much of what Julianna’s Wish seeks to accomplish.
“The big goal is to educate other families on how to fill in the holes in coverage by helping them become aware of what type of resources are out there,” Dawn Romine said.
Tom Romine, Julianne’s father, sees a need to create more community awareness through training programs that teach local authorities how to deal with the compulsive eating component of PWS and the behavioral challenges often caused by it.
To more appropriately handle problems that may arise, he would also like communities to initiate flagging systems that alert paramedics and law officials when they are dispatched to households with special needs individuals.
May is National PWS Awareness Month, but the Romines set out every day to share their hard-earned knowledge and provide support to others dealing with this complicated disorder.
Through Julianna’s Wish, Tom Romine says, “We are just a family trying to bring awareness to a cause in our own special way.”
To help advance these goals, Julianna’s Wish will hold its 6th annual Car Show and Talent Competition rain or shine from 1 to 5 p.m. May 19 in the parking lot of Catalfino’s Italian Restaurant at 10501 Blacklick Eastern Road in Pickerington.
Catalfino’s will cater the event, which also features prize raffles, vendor’s booths and entertainment from The Voices of Ohio and the Columbus Kinderchoir.
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