WREX.com – Rockford’s News LeaderBeloit family on mission to treat teen daughter with rare disease

Beloit family on mission to treat teen daughter with rare disease

By Samantha Ptashkin

BELOIT (WREX)- At age 17 most girls are hanging out with friends or thinking about what to wear to the high school dance. But for one Beloit teen, to have all of that on the mind would just be a miracle.

Cassy Boyda was born with a rare disease called Optic Nerve Hypoplasia/Septo Optic Dyslpasia. For her entire life, doctors have told Cassy's family there's no way to treat her.

"We've been to every specialist. I traveled to the Mayo Clinic. We've had every blood test. We even had her tonsils taken out thinking maybe that was it," said Pam Hottenstein, Cassy's mother.

Cassy is completely blind, mentally challenged and because of a hormonal imbalance, she physically appears much younger than a teenager. She's also prone to severe tantrums, not only hitting herself, but her mother as well. "When she's hitting herself and crying, and attacking, she'll tear down the walls," Pam said. "The last few years have been hard, watching her hit herself and things like that."

For 17 years doctors haven't had an answer, until about a year and a half ago when Pam found out about a biotechnology company that uses umbilical cord stem cells to restore vision, as well as improve hormonal conditions associated with Cassy's condition. " I cried. I cried for a whole week. At this time I didn't even think it was possible for Cassy," Pam said.

There's just one problem. The treatment's not FDA approved in the U.S., so Cassy and her family must travel to China in November. It will cost $33,000 and that doesn't include airfare, or living expenses. The family still needs to raise $15,000 more by October 30. "What else do we have? There's nothing else. We've tried everything," Pam said.

With two other children to take care of, the days are sometimes daunting for Pam, but she has a dream for Cassy and will do anything to make it come true. "I imagine the day she could see. I'd walk the end of the earth for my kids."

There will be fundraiser for Cassy October 2 and 3 at the Lube Pro in Beloit. For more information about Cassy you can visit www.cassysmiracle.com.