Little girl with rare disease celebrates New Year’s in treatment room

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KANSAS CITY, Mo. -- Three in a million. That's how many kids are diagnosed each year with one disease that doesn't go away. But a little Spring Hill, Kan., girl and her family are looking forward to a better year ahead.

The Ibrahim family and some friends were in an infusion room Tuesday at Children's Mercy Hospital, ringing out a year that's included countless infusions for two-and-a-half-year-old Elia. Last March, she developed a bad rash on her hands. The family saw a skin specialist, thinking Elia would just be prescribed a cream. That was not the case.

"We heard 'biopsy and autoimmune disease and don't Google it.' That's what they told us and of course, I did," said Haley Ibrahim, Elia's mother.

Elia has Juvenile Dermatomyositis, a rare disease in which the immune system fights the body's own tissue. It's usually skin and muscle, but it can even attack organs and become life-threatening. Elia will always have JDM, and will always need to wear sunscreen since sun exposure can trigger flare-ups. But with all the infusions and other medicines she's received this year, Elia is at least headed toward remission.

"She's a lucky one for a lot of the kids may not have that path," said Haley Ibrahim.

So they celebrated New Year's at noon since Elia doesn't feel well in the evening after treatment. Her friends at the party? Family members of other kids with JDM and similar conditions. They've connected online through the group Cure JM.

"We mostly want people whose children are dealing with JM to know that they're not the only ones," said Laurel Krider, a volunteer.

And that's another reason to celebrate a new year.

Cure JM is taking part in the online Holiday Fundraising Challenge to raise money for research. If you'd like to donate, click here.

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