A miracle in a medical odyssey

Miracles. From the day they were born, with all of their medical challenges, delays, life threatening and mysterious ailments, we knew they were absolute miracles.

Noah and Alexis, our 18 year old twins, graduated from high school on June 5, 2015.

They both gave speeches that would move even the hardest of hearts. The grace and clarity of speech, the sincerity in their words, and the pure joy of being at that podium to represent victory over death was truly miraculous.

The morning of graduation, as we were preparing for the ceremony, we reflected on Noah and Alexis’s journey.

Alexis told me she didn’t think she would survive to see this day. In all honesty, I wasn’t certain she would either.

Noah, on the other hand, was so excited to be done with high school and move on to college.

College. Noah and Alexis are going to college. That is a miracle!

Noah and Alexis struggled with medical challenges from the day they were born. They were colicky for 15 months, they didn’t reach any of their developmental milestones, they threw up every day, had seizures, urine that refluxed up into their kidneys, and many other problems.

After almost five years of research, in 2002, I discovered the first piece of the puzzle in an article that led us to the drug, L-Dopa.

That changed the course of their lives, giving them the ability to walk, talk, play sports, and enjoy full lives. It changed all of our lives, until Alexis took a turn for the worst in 2009.

We almost lost Alexis to a severe breathing issue, on several occasions, because modern medicine could not identify why Alexis couldn’t breath. Alexis went through 18 months of hospitals, medical specialists, and an exorbitant amount of testing.

We had to pull her from all sports and she couldn’t even walk down the street without needing to inhale racemic epinephrine through a nebulizer.

In 2010, Jim Lupski, Richard Gibbs, and their team from Baylor College of Medicine and the Human Genome Center, entered our lives. Thanks to the efforts of their entire team and Thermo Fisher, we had Noah and Alexis’s whole genomes sequenced.

The results were, literally, life changing.

Whole genome sequencing gave us the final puzzle pieces we had searched for and it saved Alexis’s life. We never knew if Noah and Alexis would make it to their high school graduations or if they would ever live independently.

Thanks to Whole Genome Sequencing, the team at Baylor and the Human Genome Center, Thermo Fisher, and all of the researchers who have contributed over the years, Noah and Alexis are alive, healthy, and going to college in the fall.

Alexis will also be competing in collegiate track for Biola University. Now that is a miracle!

We travel the world, sharing Noah and Alexis’s story at medical and scientific conferences, hospital grand rounds, the National Institutes of Health, Congress, and other venues, to help advance personalized medicine.

Through sharing our journey, we have reached other families who have been trapped in wheelchairs and now have full lives. It is our mission and passion to help others with diagnosis and treatments, for all disease, so they will have full lives.

We recently founded a non-profit, Hope Knows No Boundaries, to educate and connect the dots between patients, medical specialists, and insurance companies.

We have been blessed beyond our understanding and we want to give back so that other families will have hope, high school graduations, and miracles.

-By Retta Beery