Super Jude travels to meet other "Rhizo Kids" with lethal dwarfism

Jude Peters has captured the hearts of thousands during his fight with a rare, lethal form of dwarfism.

Peters, often called, "Super Jude," was born with Rhizomelic chondrodysplasia punctata -- a brain disorder resulting in shortened bones, seizures, congenital cataracts and ongoing respiratory infections.

"Things that most people would never even think about, Jude is dealing with them every day and he's overcoming them every day," Jude's father Sullivan Peters said.

Super Jude and his family just finished attending the annual Rhizo Kids Conference at Children's Harbor in Alexander City, Alabama. There are less than 60 Rhizo Kids in the world -- as most don't live beyond 2-years of age. 

At the conference, however, there is a lot of hope circulating -- a clinical trial is expected to begin this Fall in an attempt to treat these kids.

A signature for Rhizo Kids is that they are low in plasmalogens -- which are found throughout human tissues. The trial will focus on a supplement that's expected to raise their plasmalogens. It would be taken in pill form.

Coincidentally -- Alzheimer's Disease patients are also low in plasmalogens and a similar trial is expected to begin on that disease, too.

"It's an amazing situation where we're dealing with one of the rarest disease in the world," inventor of the plasmalogen drug Dr. Dayan Goodenowe said. "RCDP is one in 100,000 and probably the most prevalent disease in our time which is dementia and aging. That doesn't happen very often."

At the Rhizo Conference, FOX 46 Charlotte was introduced to 6-year old Marley Bedford. Bedford is a Rhizo Kid who has higher plasmalogen levels than most Rhizo Kids -- and because of this -- she's able to function more like your typical child.

Bedford eats on her own, talks, runs -- things most Rhizo Kids cannot do.

"The hope with the treatment overall would be if we could get Jude's plasmalogens to where Marley's are at or someone like Marley," Jude's mom Hannah Peters said.

 

 

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