Henry's ALD Gene Therapy Journey

Those of you who know Henry most likely know him by his distinctive cackle, his dimples or his deep love of animals and the outdoors. What some of you might not know is that about three years ago Henry was diagnosed with a rare disease known as cerebral adrenoleukodystrophy or Cerebral ALD for short.

Cerebral ALD, if untreated or disagnosed late, is terminal. More information on ALD is included below and at aldconnect. We are in the fortunate position where we were actually able to learn of Henry's ALD early. His diagnosis was before damage and symptoms, and have been monitoring the progression through MRIs since the discovery in 2020. Early monitoring has allowed us to get ahead of Henry's ALD treatment options and he is now a candidate for gene therapy, which has only been approved for treatment in the last year. The MRI has now shown 'activation' of ALD, which means it is officially time for him to start his gene therapy process to halt the disease progression. As of early June, Henry is making his first trip to Boston, where the team of amazing ALD medical specialists at Boston Children's will be extracting his cells to treat for transplant to happen in around 8-10 weeks. The actual timing of the whole process is dependent on Henry's reaction but typically is 8-12 weeks. Henry will be in Boston with his parents for that entire time.

Many of you have asked how you can help, and we were waiting until knowing this final timeline, location and next steps. As the family will be away from home, the GoFund me is the easiest way to support. These funds will first and foremost go to Henry's medical costs and care. It will also cover the flights, lodging and daily life expenses that will occur in Boston during his treatment and for the trips needed to Boston every 4 months after. During this time Shaundra and Billy will be taking FMLA, which in Colorado in an unpaid-leave but expenses like mortgages will still be coming in. These funds will help them not get behind, and be able to focus all their energy on Henry's health.

For anyone who would like to keep up to date on Henry's progress, there is a CaringBridge site set up where the most up-to-date items are posted: https://www.caringbridge.org/visit/henrydutton

Feel free to share this GoFundMe page and the CaringBridge site.

Thank you very much to everyone who has supported Henry and his family and continues to support him in every way. We appreciate you all and are so grateful.

Also, special thanks to Lynne Paul, and Henry's grandparents Lynne, Bill, Chuck and Andi who have also donated separately to allow the family to go on one last beach trip for some time for Henry to be a kid before having to start the transplant.

Additional ALD Information: ALD is a multisystem disease, but most prominently affects both the central and peripheral nervous systems, which are responsible for all of the body’s voluntary and involuntary functions. Untreated, damage to the brain results in blindness, seizures, and hyperactivity. Damage to the spinal cord results in the loss of the ability to walk and maintain normal breathing. Onset of the disease generally occurs between the ages of four and ten years old. Normal, healthy boys suddenly begin to regress. At first, they may simply show minor behavioral problems, such as withdrawal or difficulty concentrating, vision problems, or start to have coordination issues. Gradually, as the disease spreads throughout the brain, their symptoms grow worse, including blindness, deafness, seizures, loss of muscle control, and progressive dementia. This relentless downward spiral leads to a vegetative state or death usually within 2-5 years of diagnosis.