Bone marrow transplants: Sara’s experience in ALD

Bone marrow transplants: Sara’s experience in ALD


I My name is Sara Hunt. In 2001 both my children were diagnosed with adrenoleukodystrophy. My eldest son, Alex, had started developing some symptoms that nobody could really understand. We got the diagnosis and unfortunately there was nothing that could be done for him and so he slowly declined into a vegetative state after being a very normal and healthy young boy. So from that we found out that Aiden also had ALD and he was monitored since birth near enough, and then he had a bone marrow transplant when he was eight years old when it turned out that his ALD had started. I think we had no idea how intense it was going to be until we actually got there. We thought everything would go really smoothly because we’d been prepared and thinking about it ever since we knew that Aiden had ALD. Then we just thought, OK, well, when the time comes we’ll go for a bone marrow transplant everything will be fine he’ll come out of hospital and we’ll just carry on with our lives and we won’t have to worry about ALD anymore. But when it actually came to it, when we got into hospital, where we thought we would be there for about six weeks we ended up being in there for 16 weeks. Aiden got every complication that you could ask for and it was an experience that we never ever wanted to repeat, I don’t think. I mean obviously it saved his life so we’re incredibly grateful for that but it was traumatic – it wasn’t easy. I would say probably the practical issues more than anything else. I mean they will give you all the information you need but it won’t sink in until you’re actually going through it. But I think parents need to be practically prepared for, you know, the fact that they are, you know, they’re going to have to be with their child 24 hours a day so if they have other children, if they have jobs, if they have any financial difficulties, you know, that they’re going to have to think about all that, how they’re going to manage for that period of time while they’re in hospital. You’re so focused on whether it’s been a success medically, you don’t think about the emotional impact that it’s had on, you know, the child that’s going through the bone marrow transplant which I know for Aiden was absolutely huge. And that really isn’t given a lot of consideration when you’re preparing for it or what have you. So you know the weight gain from steroids, losing all your hair, being out of the loop with your friends and things like that, it’s quite huge when you try it when you’re trying to get your child back into normal life again and I think that’s something that maybe should be considered more carefully. Talk to other parents who have already been through it, most definitely, and probably talking to parents who have already been through it for a similar reason, so you know if it’s because of something like a rare disease or if it’s because of a cancer or what have you. Just speak to other parents.

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