"When Noah and Alexis were 9-months-old, they were floppy - you actually had to hold their head up because it would flop back. Alexis had seizures. Alexis and Noah threw up every day," recounted mother Retta Beery of her twins.
Noah and Alexis Beery spent much of their young lives in and out of the hospital. Misdiagnosed at the age of two with cerebral palsy, their health problems continued. Retta was the one to determine they had the movement disorder dystonia and with a different medication, everything changed. Noah stopped getting sick.
"Alexis went from wheelchair-bound and feeding tube-bound to playing sports and doing things we never thought possible."
All was well until Alexis hit middle school and had major trouble breathing. Another 18 months went by of doctors not knowing what was wrong.
"It was just heartbreaking for me," said Alexis. "I personally did not know if I was going to get through it."
It was then that Retta decided to have her children's entire genome sequenced. A genetic mutation was found and the family finally had answers, a direction and hope.
"We have the ability and duty to save lives of millions of children worldwide through scientific advancements that we make here in San Diego," stated Dr. Donald Kearns, president of Rady Children's Hospital.
The Ernest Rady family gave $120 million to establish the Rady Pediatric Genomics and Systems Medicine Institute; it will focus on mapping the DNA of children in the hopes of curing childhood cancer, juvenile diabetes as well as autism. The money will help bring more world-renowned scientists to our city.
"An institute is not walls and floors and labs - it's people," explained Chief Scientific Officer Dr. Gabriel Haddad of Rady Children's Hospital. "We really want the best and the brightest.
The best and the brightest to make discoveries that will lead to personalized medicine - a new frontier of treatments and cures. For other families with mysterious illnesses like the Beery's:
"My heart, my passion, is to use what we've been through to help other families. That's our passion," continued Retta.
"I really hope they they look at us as role models because we were in their position years ago - just to know we got our case solved, and one day their case will be solved as well," said Noah.
We can all learn from this 17-year-old who has been through more in his years than many of us will ever go through in our entire lives.
"Through all the struggles and challenges, they taught me to not lose hope and keep on fighting and keep on surviving - fighting and surviving, live life to the fullest each and every day," concluded Alexis.
There will be two new lab sites: one at Rady's and another inStoreyy Pines near some of the other institutes. With Rady's,USDAD, Salk, SanfordBurn hamm, Scripps and others, this region stands out as one of the most important hubs in the world for research, for sharing information and for making medical breakthroughs.
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