Jona Ghelli, 16 years, Cerebral Palsy

Home Country: Holliston, Massachusetts, USA

Diagnosis

Jona Ghelli, a 16-year-old, was diagnosed with cerebral palsy and microcephaly which results in significant cognitive and physical impairments. She also suffers from a seizure disorder.

Microcephaly is a neurodevelopmental disorder, causing the size of the head to be small indicating a problem with the development of the brain / central nervous system.

Treatment

Jona and her parents travelled for stem cell treatment. Although Jona was 16 years old at the time, her body’s own stem cells were extracted from the bone marrow and reintroduced into the cerebro-spinal fluid. They had the potential of improving her condition.

Result

Although life has since returned to its normal pace in the Ghelli household, Joanne Ghelli said she is still thrilled at the improvement in her daughter as a result of the treatment.

During the procedure, adult stem cells were taken from Jona's hip bone and sent to a lab before being injected back into her spine.

Joanne Ghelli said the first hint that the treatment had a level of success came a few months later when Jona suffering from a stomach flu started feeling nauseated. She expressed erself and told her mother she coundn’t move. Joanne Ghelli said the seemingly run-of-the-mill statement was important because Jona had always had trouble expressing when she was sick or in pain.

A week later, when out for a picnic, Joanne said she was holding Jona's hand, which was totally relaxed. Damage to the motor control centers in Jona's brain caused increased muscle tone, making her muscles stiff. Joanne Ghelli said her daughter used to complain of pain if someone held her hand earlier.

There are other small improvements, too, like when Jona is getting dressed. Joanne Ghelli said she used to have to struggle to get a pair of pants onto Jona, but now she doesn't fight back and even points her toes into the pant legs instead of keeping her feet at a 90-degree angle.

But perhaps most encouraging, Jona's mother said, are the small steps she has made in cognitive ability and her ability to voice her needs.

Jona goes to a fitness center once a week, where her physical education teachers usually have to prompt her to use machines. Same goes for the therapeutic horseback riding sessions she attends - she uses balancing techniques where she puts an egg on a spoon and switches hands. The switch would usually require prompting from her instructors as well.

Since the treatment, Jona has been making those moves on her own without any prompting.

The treatment has definitely showed positive results and Jona’s parents are looking forward to a second round of treatment soon.


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