Nash's Ray of Light - ALD Awareness

Meet Nash. He is a ray of light. The kind of kid who walks into a room and lights it up with his kind, caring spirit, and joyful zest for life. You feel lucky to be in his orbit. 

Until February 27th, when Nash suffered a debilitating 75-minute seizure, he was able to do all the things he loved with complete autonomy. Just a few months ago, Nash was on a miles-long hike with his family and walked up and down 331 steps without a problem. 

Now after a diagnosis of Adrenoleukodystrophy   (Cerebral X-ALD), a terminal and rapidly progressive brain disease, Nash struggles to walk unattended, form words with clarity, and is rapidly losing his vision, hearing, and memory. Life after February 27th will never be the same for Nash, his family, and the vast network of friends who love and adore him. 

Nash will continue to rapidly decline cognitively and physically over the next 6 months - 2 years. Nash will likely be wheelchair-bound and eventually require a feeding tube within the next two years. Despite being frustrated with his new limitations, Nash never stops spreading his smile, joy, and laughter as freely as he ever has. It is a lesson for us all to be present and to appreciate every day that we have together.  We intend to make every day we have with Nash, the best day it can be...and you can help!

I hope you will read below Nash's picture to learn more about Nash, Adrenoleukodystrophy, stay tuned for updates on his Make-A-Wish dream, and join Nash’s Ray of Light GoFundMe to help Nash and his family through this devastating reality. 

We also hope you will join our effort to spread awareness of this silent, deadly, and treatable disease (if diagnosed at birth) by opting in to our email list. 

Please help us keep Nash’s Ray of Light shining long and bright. 

With love, 
Marlena (aka Auntie M)


Nash’s Diagnosis
On February 27, Nash suffered a debilitating 75-minute seizure and was transported via ambulance to the ER in Charlotte, NC. After EEG, CT, MRI scans, Nash’s incredible neurology team detected abnormal brain activity. They ultimately made the diagnosis of Adrenoleukodystrophy on February 29, 2021. 

MRI results show that Nash is further along in this disease than his physical symptoms convey. The fear is that his physical decline will rapidly deteriorate to match the significant white matter deterioration in his brain. Nash can no longer do the things he used to do with ease - write his name, color, play sports, freely play on the playground, or attend school without assistance. 

How You Can Help
Your support in this fundraiser will provide immediate support to Nash and his family. Contributions will: 

 - Pay for Nash’s medical and palliative care

 - Allow his parents to extend their leave from work to focus entirely on his care and cherish the time they have left with their son

- Reorganize and refurnish their home to accommodate Nash’s needs for accessibility

 - Alleviate pressures of everyday living (yard work, laundry and other household chores) since Nash requires continuous 1-on-1 care

 - Purchase toys and games recommended by Nash’s physical and occupational therapists 

 - Travel expenses related to Nash’s medical care

Next Steps 
The family has consulted with one of the nation’s leading experts in Leukodystrophy at Massachusetts General Hospital. They have, devastatingly, been informed that Nash's disease is too advanced for bone marrow or stem cell therapy treatment that would slow the progression of the disease. Nash has been referred to the Leukodystrophy Center in Atlanta. They will advise how to make Nash's symptoms and his life as comfortable as possible. 

Make-A-Wish
Nash is on an accelerated track with the Make A Wish Foundation . Nash spoke to Make-A-Wish in early March via Zoom to discuss his wishes:

 - Riding a T-Rex/Being a T-Rex for the day
 - Riding a Robot/Being a Robot for the day 
 - Go to the beach
 - Meet Dude Perfect

Nash’s joyful dreams offer a glimpse into his indomitable energy and playful personality. We hope to share his Wish update with you in the coming weeks.

A Preventable Fate
Adrenoleukodystrophy (one of over 50 known leukodystrophies) is detectable at birth, but currently, only 13 states in the U.S. include a newborn screening for the disease. If detected early, infants can receive tailored and extensive neurological and endocrinological care. 

“An estimated 1 in 21,000 male newborns will test positive for ALD every year, yet only a handful of states test them at birth — a cost of only $2.50 per baby. Newborn screening, together with FDA approval of ALD gene therapy, could, finally, mean hope for families who had no hope before.” - Boston Children’s Hospital Web Citation 

Nash was not screened for this disease as a newborn because his home state, North Carolina, does not offer this simple blood test in routine newborn screenings.  Early screening and detection for leukodystrophies is vital. The disease can, as in Nash’s case, rapidly deteriorate the white matter of the brain without any noticeable symptoms. Once symptoms occur, it is often too late to treat or halt the progression of the disease.  

The devastating fact that Nash’s disease could have been treated from infancy had he been born in New York, Tennessee, California, Pennsylvania or any other state with ALD newborn screening , is a horrifying reality. There can be no true sense of equity and access in the care of America’s children, without offering the same simple blood tests in every state.

Keep in Touch
Our work to help Nash doesn’t stop here. We are committed to creating a nonprofit organization, Nash’s Ray of Light, that will:

 - Spread awareness of all leukodystrophies, especially, X-ALD

 - Advocate for Adrenoleukodystrophy newborn screening to be added to North Carolina’s standard newborn screenings

 - Advocate for standardized newborn screenings, that include leukodystrophy screening, across all 50 states

 - Advocate for treatment and early intervention

 - Partner with existing leukodystrophy research institutions and advocacy groups 

No child should suffer such a preventable fate based on the geographical location of their birth. We must advocate for all kids so their lives can continue to shine long and bright. In that way, we keep Nash and his beautiful memory alive.  

We encourage everyone who donates to sign up for our email updates to keep in touch as we form our 501(c)3. 

Thank you for sharing this information in any way that you can with others that can help all children and families suffering from ALD.