Brown-Vialetto-Von-Laere syndrome

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Ruby Bond was a healthy little girl, when she suddenly started to lose her vision and ability to move. But an over-the-counter treatment may have saved her life. 

For Ruby, game time with her little brother and dad used to be tricky. The seven-year-old had been losing control of her hands, her arms, and her legs.

Ruby says, "It was kinda hard to walk and I tripped a lot." 

Ruby also started to lose vision. Her parents noticed the first signs in first grade.

Paul Golumbek, MD, PhD, a  pediatric neurologist at Washington University in St. Louis says, "It's called Brown-Vialetto-Von-Laere syndrome." 

With BVVL, the body can't transport riboflavin into the brain or the nerves in the eyes, ears, or limbs.

Golumbek says, "Without that vitamin the nerves will actually die and be lost."

Dr. Golumbek's suggestion, over-the-counter supplements, including b-2 vitamin or riboflavin.

Joy Raccagno-Bond, Ruby's mother says, "He said go buy riboflavin and start it now." 

Ruby takes 15-hundred milligrams a day, 50 times the amount recommended for adults with a b-2 deficiency.

Golumbek says, "You can take a super high dose of this and it's easy to flush out of your body.  You won't overdose on it." 

Within a few months, Ruby's vision began to improve.

Ruby says, "I can see signs. I can see small print." 

Golumbek says, "Over that six months on my bedside it went from 20/100 to 2/20.  Which is amazing." 

Joy says, "The way that ruby has bounced back we are pretty hopeful that it is working for her."

Ruby has regained some of her arm and leg strength, although she does still have trouble extending her thumbs. Her brother, Elio  also has BVVL and takes the vitamin in lower doses.

 

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