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Family hopes to find cure for daughter’s ‘orphan’ disease

By DEBRA BANERJEE
Photos courtesy Hahn family

Nikki and Drew Hahn (holding son Charlie) and their daughters Josie, Ella and Addie, on left.

 

Five-year-old Addie Hahn was unable to eat, kept falling, couldn’t climb stairs or open a door. As she got weaker and weaker, her parents, Drew and Nikki Hahn of Quaker Ridge, were understandably frightened when numerous doctor visits and tests couldn’t determine what was causing Addie’s deterioration.

During a vacation hiking in Michigan, Addie developed a mysterious, symmetrical rash on all her joints. At first, it was thought she had been bitten by an insect.

“In the meantime, she was fading away,” Nikki told the Inquirer tearfully. “She was dying.”

Coming back to New York, Addie’s dermatologist, who recognized the papules on her body, said, “I have a bad feeling about this,” Nikki recalled.  A biopsy and visit with the rheumatologist confirmed their fears. Last October, when Addie was 4 ½ , she was diagnosed with a rare autoimmune disease of the connective tissue called juvenile dermatomyositis. JDM, according to the website CureJM.org, is a “systemic, autoimmune inflammatory muscle disorder and vasculopathy that affects children younger than 18 years. JDM primarily affects the skin and the skeletal muscles.”

Addie also has celiac disease, rheumatoid arthritis and marcus gunn syndrome, a rare genetic disorder in which one eyelid makes rapid motions when the jaw is moving.

Addie began an aggressive course of treatment right away and is doing well, her mother reported. She has started kindergarten at Quaker Ridge Elementary School.

The Hahn family is one of the organizers of a dinner and auction fundraiser to benefit Cure JM, which will take place this Saturday, Sept. 19, from 7:30 to 10 p.m. at The Coliseum, 15 S. Broadway, White Plains. Tickets range from $125 individual to $5,000 donor.

The event will feature food and beverages, a live auction as well as silent auction of experiences, “tickets to amazing shows, unique vacation stays,” and a two-year lease on a 2015 Mercedes Benz, said Hahn.

“We hope to build awareness of this awful disease. We hope to fund $1 million this fall. We want to find a cure,” Hahn said. “Every bit of awareness helps bring us closer to a cure for my sweet little girl, Addie.”

The Hahns have been active in the community — Addie’s father Drew is vice president of the Scarsdale Volunteer Ambulance Corps. Nikki has served in the Junior League and is 2015-16 PTA president elect at Quaker Ridge. She hopes the community will turn out to support their cause in their time of need.

Addie, the third of the Hahns’ four children, goes to Children’s Hospital at Columbia once a month for an infusion of intravenous immunoglobulin (IVIG) to boost her immune system. Once a week she has an injection of the chemotherapy drug methotrexate. She regularly takes high doses of steroids and suffers its “bad side effects” such as hair loss, weight gain, mood swings.

A so-called “orphan disease” because it affects less than a certain percentage of people, JDM is thought to affect those who are genetically predisposed and it can be triggered by a virus. Sun exposure can cause a flareup.

Now Addie always wears a hat and a long-sleeved shirt and the family has had to curtail some outdoor activities, but “we want her life to be as normal as possible,” Hahn said.

Although the hope is that Addie will stay in remission, “her journey is a long one,” her mother said. Many children with the disease are wheelchair-bound.

“At first I felt, why me?,” Hahn said, “but then I thought, why not me? I have no choice but to move forward. We have to plug along.”

To learn more about juvenile dermatomyositis, go to curejm.org. To bid in the silent auction, go to www.biddingforgood.com/curejm. For information or tickets, contact nikki@newsroomsolutions.com.


Read more local coverage of your hometown in this week’s issue of The Scarsdale Inquirer. Newsstand copies are available at several locations listed above, or subscribe today for convenient home delivery.

 

SEPTEMBER 18, 2015