Family goes bald to raise awareness about rare disorder

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STAUNTON, Va. (WHSV) -- A Staunton, Virginia family is spreading the word about a loved one who has a rare genetic disorder.

In an effort to raise money to research Rett syndrome, Desiré Zimmerman's family promised that if a goal of $2,500 was met, they would shave their heads.

On Saturday, they kept their promise.

Desiré's story

Desiré's family says she's just like any other 23-year-old.

"She loves boys, clothes [and] music," said Brenda Zimmerman, Desiré's "bonus mom" — a term she prefers over the traditional "step mom."

But, Desiré suffers from Rett Syndrome, a condition that impacts one in every 10,000 girls, according to the Rett Syndrome Research Trust.

"Desiré is in there and she's smart, but she can't get it out. Imagine Parkinson's, cerebral palsy and autism, all in one body," said Zimmerman.

She struggles to move her hands, walk or even speak.

Raising Awareness

"We started a fundraiser about two years ago, and we said if we got to $2,500, we would shave our heads," said Zimmerman, who was the first to go bald at Gypsy Hill Park on Saturday.

One by one, all five family members faced the clippers to thank those who helped to raise the funds.

While some were nervous, they said it was worth it.

"I would do anything for her," said Desiré's mom, Angela Truelson.

Hoping for a cure

Gene therapy has shown the ability to reverse Rett in animals, but there is no cure for humans.

The rarity of the disorder has made research studies difficult and rare.

Truelson says the scientific community is close to curing Rett Syndrome, and she hopes to continue raising money to get them there. She was also a little scared to shave her head.

If interested in learning more about Desire or Rett Syndrome, her family has set up a site to provide its readers will information.

Read the original version of this article at whsv.com.