We are busy celebrating Anna’s big news and preparing for the HoliDAZE, but wanted to take some time to introduce you to another ALD champion, Mason.
I met Mason’s mother, Tina, this fall and she agreed to share a bit of their ALD story. Tina is a remarkable mother and, I’ve not met Mason in person, but I’ve fallen in love with his smile.
THIS is ALD #5 — Mason
Mason was the best baby. He developed all milestones at or before the age he should. He was riding a bike without training wheels at 3. We had no concerns with his development until second grade. He had a hard time with multiple step directions and with math (common core). He would have a concept and then it would be gone. He would bring his math papers home and I would erase them and give it to him to practice. He didn’t remember ever seeing these papers.
Mason was diagnosed with Adrenoluekodystrophy (ALD) in April of 2016. He was 8. We were told there was really nothing that could be done. We have an awesome support system and everyone started researching and found the team in Minnesota (University of Minnesota Pediatric Blood and Marrow Transplant Program is a leading program for treating ALD) . We made our first trip to Minnesota in May where they decided Mason was a candidate for a bone marrow transplant. His Loes score (the scoring system to evaluate the evolvement of X-ALD) was on the high side, but Mason’s doctors said he was compensating very well with what the disease was doing to his brain. They were hopeful. We were so scared but this was the first time someone gave us hope.
Mason had his bone marrow transplant on July 11th, 2016. We spent 30 days in the hospital and then we had to be in the area for 3 months (some hospitals release transplant patients to rehab centers/other local facilities once they have reached a certain milestone. In Mason’s case it was to a Ronald McDonald House near the hospital). By this time, he lost a lot of vision, hearing and processing skills. When we left the hospital, he was in a wheelchair and couldn’t see. Even then he had goals…goal 1 was to get rid of his NJ tube (feeding tube) and goal 2 was to be home for his birthday.
They discharged us to go home on October 19th (his birthday is October 24th) and he was NJ tube free!
Mason is an incredible fighter. He told a therapist when asked about how he felt about his vision loss that he’s not going to let it get him down. That’s the kind of kid he is. He is a very friendly guy and loves to tell jokes and make people laugh. He does get frustrated with things he use to be able to do that he struggles with now, but he usually has a smile on his face. He is currently back in his school which he loves. He kind of regressed a little with social skills since he couldn’t be around kids his age and was very scared around them. Once he got back in school, he gained a lot of his confidence back. He is learning Braille and the use of the white cane for mobility. After stopping a few of his medicines, he got some of his vision back. He can see and read but at a slower pace. We are so blessed, grateful and amazed by his progress. We had no clue this disease even existed. Awareness is so important.
(I’ve added a few details to explain terms that the non-ALD reader might not understand – Jess)
Thank you Tina for sharing this piece. Mason’s story is similar to Jack’s in that there was not an early diagnosis. It’s important for everyone to remember how hard it is to diagnose ALD – why newborn screening is so vital to changing the future of this disease. Luckily, Mason had a successful transplant and is doing quite well. Life is complicated for him, but he seems to have the same great attitude and electric smile as JackO.