TGen opens Center for Rare Childhood Disorders - Cincinnati News, FOX19-WXIX TV

TGen opens Center for Rare Childhood Disorders

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PHOENIX (CBS5) -

One of the world's premier facilities for treating children with rare and life-threatening disorders has opened its doors in downtown Phoenix.

TGen (Translational Genomics Research Institute) cut the ribbon on the brand new Center for Rare Childhood Disorders this morning.

Attendees included former senate candidate and U.S. Surgeon General Rich Carmona, MD, Phoenix Mayor Greg Stanton and Arizona House Speaker Andy Tobin.

Carmona is joining TGen's scientific-medical advisory panel. His role will be to help incorporate genomic technology into a patient's standard of care.

"TGen brings hope to families who have been in dispair," said Carmona.

"This is a special place," said Tobin. "This place looks after our children and children from all over the country. And the world."

No one knows the TGen mission better than 13-year-old Shelby Valint, who CBS 5 profiled in a report earlier this year.

Valint was confined to a wheelchair until TGen scientists discovered the root of her medical problem after completing an analysis of her DNA. After prescribing certain medications, Valint has been able to regain control of her life.

"It's real hard to explain how much TGen has changed my life," Valint said to the group assembled to mark the TGen center's grand opening.

Seven-year-old Seth Belnap was diagnosed with Leigh syndrome five years ago. It is a severe and often fatal cellular disorder.

"We were just watching helplessly as our sweet little boy was dying," said father Newell Belnap. "There was nothing no one could do. No one could tell us what was wrong with him."

Newell Belnap says he went to sleep some nights planning his son's funeral. Seth Belnap's three siblings, Sydney, Spencer and Sierra, are also being treated by TGen.

"I know the doctors are working to find. Working at it. To help us," said 19-year-old Sydney Belnap.

The siblings suffer from mitochondrial disease, an affliction genetically passed on to them affecting their cells.

Late last year, doctors and scientists at TGen, including child neurologist Vinodh Narayanan, MD, identified the problem gene in the Belnap family's DNA.

Staff at the newly opened TGen Center for Rare Childhood Disorders are hoping to help many more kids just like Seth Belnap.

"It's a dream we have had with TGen for about 10 years and this is the fruition of a lot of hard work," said Vinodh Narayanan, MD, medical director of the TGen Center for Rare Childhood Disorders.

TGen is a nonprofit organization that maps the human genome.

The new center and other TGen projects are funded through federal grants and donations.

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