Sean Suppan's Story | Adrenoleukodystrophy
- Slide 1 ofFirst Battle with ALD
Patient: Sean Suppan, 4 years old
Parents: Ellen and David Suppan
Siblings: Ashling and David Suppan
Hometown: Tobyhanna, Pennsylvania
Primary Physician: Paul Orchard, M.D.
"In 2003, after a lot of doctor visits, we were told that my other son David had ALD. He was 7. I had no family history, but it has to start somewhere. Back then, there was nothing we could do for him. Within 3 months, he was in a bedridden state, and then went to a vegetative state, and he was like that for 4 years. David passed away in October 2006. We miss him but were relieved he was no longer hurting."
- Slide 1 ofInherited Condition
Ellen keeps a list of toys for her husband to bring to keep Sean busy.
"Shortly after David’s diagnosis, I found out that we were expecting and later learned I was carrying a boy. And yes, he carried the gene, but had a 50/50 chance of not developing symptoms. With Sean, we were very proactive. We have known since he was born that he has ALD. When Sean was only 3, he came down with a high fever and we did an MRI, and everything was clear. We did another MRI 4 months later and there was a spot there. We were shocked. David was 5 when this happened."
- Slide 1 ofThe Best Program
A favorite activity for Sean is spin art, which he proudly displays in his room.
"My main concern was to get Sean where he needed to be. There are good hospitals. They have done a couple of transplants, but not as many as the University of Minnesota. The most transplants for ALD have been done here, pioneered here and they are still working on it."
- Slide 1 ofUnderstanding the Risks
Sean and Ellen in their room on 5D, the inpatient pediatric transplant unit.
"The downside of going through the transplant is that the chemo may bring on more advancement. It’s a no-win situation. If I don’t do anything, I have seen the course it takes. But, we at least know that he will not get to the stage that my other son had to endure for four years. We are thinking positive."
- Slide 1 ofNew Treatment
Brain MRI scans of 10-year-old boy with advanced cerebral ALD before (left) and after hematopoietic stem cell transplantation (right).
"I am thankful and grateful that Dr. Orchard came up with this treatment. It is bittersweet for me. Back in 2003, they did not do transplants for symptomatic kids like David. The progression with David was very cruel for a parent to watch. We are doing for Sean what we could not do for David."
- Slide 1 ofCommunicating with the Team
Dr. Tolar and the pediatric BMT care team gather together for morning rounds.
"I really like that you have two opportunities here to meet the doctor. If you miss one of them, you’ve always got the other. People that haven’t had as much experience in hospitals as me don’t understand how important that communication is."
- Slide 1 ofSupporting Families
Ellen chats with Teresa, a nurse coordinator who coordinates BMT care from start to finish.
"Thankfully they have a wonderful program here called Care Partners, where a volunteer will sit with Sean for a couple hours. I can go take a shower and do some laundry, get some fresh air. It does my psyche good. I come back renewed and refreshed. I have never heard of that in other hospitals. If I need a break, she will come and sit with Sean, or take me places."
- Slide 1 ofAdvice to Parents
Ellen has a room at the Ronald McDonald House, but currently spends most of her time in the hospital with Sean.
"Don’t expect anything to be normal. It’s a new normal. It’s a new way of doing things. Be ready. I always keep my gas tank half full, because I don’t know when I’ll need to go to the hospital. Live in the moment. All the other things will fit into place."