SAN DIEGO (KGTV) - The family of a 4-year-old girl given a grim diagnosis is giving thanks this holiday season amid some stunning signs in the past few weeks. A groundbreaking treatment taken on by Rady Children's Hospital has led to some remarkable results.
For Daphne Graskewicz-Prado, the mom of 4-year-old Harlow, watching her daughter using her walker to walk at a quick pace is a sight she was told would likely never happen.
"Just earth shattering gratitude is how I feel this holiday season," Graskewicz-Prado said.
It's a far different feeling from when Harlow was around 2 years old and diagnosed with a rare brain disorder, TUBB4A Leukodystrophy, and given a grim prognosis.
"We were told that she would lose every ability that she had. She would become locked in her body, but mentally still 100% there until she passed away," Graskewicz-Prado said.
Most of those diagnosed with the condition do not live past the age of 20.
Harlow needed a walker to take slow steps, and her speech slowed. Last year, her family moved from Illinois to Temecula after a Carlsbad nonprofit, N-LOREM, agreed to help, paying a big part of the cost for groundbreaking gene therapy treatment.
While other facilities declined, Rady Children's Hospital agreed to treat Harlow. In October and then earlier this month, Harlow became the second person ever to receive the spinal injection treatment, which aims to silence the toxic gene.
Soon after the injections, something remarkable happened. Harlow's speech has gotten stronger, and so did her walking.
"It's been a miracle, and we expected to see nothing, you know, at this point and just seeing her progress is incredible," an emotional Graskewicz-Prado said.
Harlow will receive one more treatment in January, then four times every year.
"It gives her the opportunity and me the opportunity to hope, which is something that we didn't have before," Graskewicz-Prado said.
A GoFundMe campaign has been set up to help Harlow's family, which had to raise $100,000 for the initial treatments.
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