Sharing THIS is ALD stories has allowed me to learn a great deal about the different faces of our disease. Some are hard to share, but it is important that people understand the different paths that ALD can take. Wendy reached out to share the story of her two sons, Richie and Ryan. It’s shows a different side of ALD.
THIS is ALD #12 — Richie and Ryan
This is the story of my first born, Richie. He was born in 1975. He was so bright and brought so much joy. He started developing his “tan” very early (darkening of skin is often a sign of ALD/Addison’s Disease). He did amazingly in school through the 4th grade. That is when school work started to be a struggle. I took him to the pediatrician, who proclaimed him to be very healthy and told him to work up to his potential. When Richie started the 6th grade, I took him to an optometrist who referred us to UC DAVIS specialists. Endocrinology residents asked if I knew who his father was, due to his dark skin!! Anyway, he was diagnosed with Addison’s Disease and we were ultimately diagnosed with this “very rare” disease, ALD.
I met Augusto Odone, Dr Rizzo, and Dr Moser at the ULF conference that summer. Richie had his first seizure on our way to the conference. Dr Moser told me to expect the worst 6 months of my life. Luckily, Richie started taking Lorenzo’s Oil immediately (continued through age 18) and his disease did not progress for many years. He graduated high school and worked and lived on his own for many years.
Unfortunately, the ALD eventually started to progress and Richie moved home about 10 years ago. He is now 42, doesn’t talk, walks a bit with a walker, in our home, has caregivers 6 hours per day who bathe and dress him, and feed him. We had a g-tube (a tube that goes directly into his belly) put in about a year ago when he was not eating while hospitalized for a UTI. We only use it for meds and fluid at this time. We have been blessed because Richie seems happy, sometimes giggling, and does not seem to mind being cared for. Any progression seems to come slowly.
Ryan was 6-years-old when his brother, Richie, was diagnosed with ALD. Ryan, had Addison’s Disease, but rather than having dark skin, he had always craved salt (“salt seeking” can be another sign of ALD/Addison’s Disease). When he was 2-years-old we came close to losing him. What no one knew is that he was suffering an Addisonian shutdown of all his bodily functions. It took three doctors working on him to save his life. He was on life support and not expected to make it through the night, but he survived and I thought that was the worst battle he would ever fight.
This is why newborn screening is so important. Had we known, we would never had to almost lose our baby. After finding out his diagnosis, Ryan took Lorenzo’s Oil until he was 18-years-old. He had MRIs yearly and never showed any demyelination. He graduated from a university, got married, and had a son four years ago.
That is when everything started to change. He had had some incontinence problems, and then balance issues appeared. I had thought that if the childhood form of ALD did not appear, then the worst he might face would be mobility problems. He quickly moved from a cane, to a walker, to a scooter and finally to a wheelchair all within a few years in his mid 30s. He was exhibiting a lot of anger and insisted that he had to walk again. In the last few years, being angry was exhibiting as psychiatric problems. He attempted suicide at least twice.
Ryan also had a large wound that ended up septic and his decline sped up. Within only months he has lost his speech, his legs are atrophied, he can’t use his arms, and he has been hospitalized for the last few months. I sent his latest MRIs to KKI and Stanford. Both have agreed that he has hind brain involvement, only occurring in 5-10% of ALD cases. It is known to be rapidly progressing. Now my daughter-in-law is looking into hospice. He definitely qualifies, but you have to pay for caregivers, and Ryan needs 24 hour care. I had no idea this could happen.
Wendy shared this piece with me on January 25th. I received the news last week that Ryan lost his battle with ALD last weekend. Another beautiful life taken too soon by this monster.
Richie and Ryan’s stories are different than many I’ve heard over the years, but that’s the thing about ALD – it never looks exactly the same person to person. The only commonality I see is that these boys/men/humans are remarkably strong and that nature can be cruel.
Thank you Wendy for sharing your family’s story. The more we share the different faces of our disease, the more people will understand the importance of newborn screening to changing the future of ALD.