Madeleine is 29 today, December 8th, 2022
Madeleine turned 29 today, December 8th, 2022. We are so grateful for the 29 years she’s been in our lives, and now we are getting ready for her 30th Birthday Celebration next year.
Those of you that know Madeleine, know this 29th birthday milestone is nothing short of a miracle.
Madeleine was diagnosed at 11 years old with Neurodegeneration with Brain Iron Accumulation (NBIA), a rare (2 in 1 million) genetic neurological disorder characterized by abnormal accumulation of iron in the basal ganglia. The average life expectancy after diagnosis is 11 years.
She began to lose her vision at 11. She started to suffer from seizures at 15. She was in a wheelchair by 18. Today, she lives at home with her mom and dad. She still smiles through it all, loves to sing along with pop hits from the 90’s, and laughs at her dad’s bad jokes or when the “dog” farts.
Her entire family, mom and dad, brothers and sisters, aunts and uncles, cousins and Bubbe and Paw Paw, are all so grateful for the Madeleine miracle, which is due in no small part, to the care provided by Madeleine’s Neurologist, Juan M. Pascual M.D., Ph.D.
Madman
Dr. Juan M. Pascual is even more rare than Madeleine’s disease. In fact, he is one of a kind.
People around the world suffering any variety of neurological disorders come to see Dr. Juan M. Pascual. He is a Professor at The University of Texas Southwestern Medical Center and one of the few actively practicing neurologists (pediatric and adult) who is also a laboratory scientist.
Dr. Juan M. Pascual is the Director of The Rare Brain Disorders Program (Clinic and Laboratory) at UT Southwestern Medical Center. His approach to research into rare brain disorders is unique and can impact an array of neurological disorders far more broad than Madeleine’s NBIA.
Dr. Juan M. Pascual specializes in genetic and metabolic disorders of infants, children and adults with a holistic perspective that genes alone do not trigger neurological issues, nor do they create neurological exceptions that lead to superior intelligence or athletic performance. His approach addresses the entire system and process where genes are activated and interact in the growth of living organisms. Where most neurological research currently focuses on blocking neurological activity that can result in symptoms such as a Parkinsonian tremor or a Migraine headache, Dr. Juan M. Pascual’s research concentrates on activating neurological activity that’s absence caused the symptom in the first place.
You can read more about Dr. Juan M. Pascual, his research and his credentials on the UT Southwestern Medical Center website.
Starting today, Madeleine’s family is beginning to prepare for her 30th Birthday Celebration. We hope you will signup here to receive regular updates leading up to her 30th Birthday Celebration.
In addition to celebrating 30 years of miraculously having Madeleine in our life, we plan to show our gratitude for the role Dr. Juan M. Pascual has played in that miracle by raising $3 million to fund Dr. Pascual’s Rare Brain Disorders research.
We have already started the Madeleine Rebekah Verges Foundation, a not-for-profit fund dedicated to funding the Rare Brain Disorder Program.
Please signup to hear more as our plans for Madeleine’s 30th Birthday Celebration develop.
What the Verges family thinks of NBIA
