I have 3 sons who have just been diagnosed with ALD

The youngest 2 will be having bone marrow transplants. Was wondering what peoples experiences were. Also my eldest is in an arrested state at present, but due to his LOES score being 14 and already having suffered nerve damage there is nothing the doctors will do when it starts progressing again. Was wondering if anyone out there had experienced this at all. Even though we are struggling we are grateful that this awful disease was picked up early via an MRI due to Autism research. My eldest and youngest both have Autism and ADHD, with the youngest also having Tourettes. This may seem long winded but think it would be beneficial to talk to people also going through this.The last 3 weeks have been the worst in our families life.

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  • Hello Littlelegs2,

    Thank you for getting in touch. I am really sorry to be reading about your sons and for this difficult time for your family.

    We have a contacts list of people who would be willing to provide help to you about all aspects of ALD. If you would like to get in touch with someone, please respond with your email address.

    I will also send an email out to all members asking them to share their experiences with you here.

    If you require any other support, please do not hesitate to get in touch.

  • For my son we offer only quality of life, has no more to do. We have a multidisciplinary team to care for him at home.

  • I am really sorry to read about your sons,What age are your sons, My son passed awayaged 12yrs, My other son is 22 and he has the adolescence ald,

  • My sons are 16, 13 and 10. The middle child being diagnosed was a complete blow to us, we had prepared ourselves for our eldest having it but not in our wildest dreams did it enter our head that our middle child would have it.

    Am sorry to hear about your son who passed away, and i hope that your other son isn't to badly affected.

  • Hiya, im sorry to hear that, ijust find everything so condractictory, they say between ages 4/10 for symptons, thenamn,my son started having symptons at 14, nobody listened, now he has adolescence ald, Has mental health problems, Iam sorry about your sons , How is your 16yr old, Are they badly affected,

  • Hello Littlelegs2,

    First I want to tell you how sorry I am. Ald is an awful disease to have. My son was diagnosed with it 10 years ago. The doctors at that time told me James only had 18 months to 3 years to live. And there is nothing we can do for him. It has been a long hard road, But James is still with us today. We do quality of life with him. James is a very happy young man. He has a g-tube for all of his meds and water flushes and we will do a feeding supplement if James doesn`t eat 50 percent of his meals. All of his food is puree ans his drinks is thicken. James can not walk is wheelchair bound. Cant talk but will make baby noises and we have a communication device for him..Right now he has open sores on his bottom. And James will turn 22 in June.

  • Am glad your son is still with you, but the quality of life bit scares the hell out of me to be honest. I know it's something you do as a parent but hate the thought of it.

  • It is very scary but my son couldn`t do a bmt he had progress to far so we do the next best thing for him and that make him as happy as we can and quality of life with him

  • Email from one of our members today:

    "I have only one child with ALD, I managed to give him my duff female gene, and my daughter the good one! I can't beat myself up about it as it was obviously unintentional and I so wish he didn't have it but I can't blame myself. He was diagnosed some 20 odd years ago, as was I with the female version, in retrospect I can see he went through the Kubler Ross stages of grief, I'm not sure where he is up to now but there was a lot of denial, anger, and bargaining. it's a hard thing being given a no cure diagnosis and a short degenerative life prognosis at the age of seventeen.

    I wonder what the results would have been had he taken to the diet, but he was too old to feed and as I said there was a lot of denial.

    I don't know the reasons why but he is still alive today at 42 and as normal as a lot of people, his legs are wobbly and if he is stressed he goes into his own world, he is also to some extent stuck at a certain time in the past, when due to extreme stress he got 'pushed over'

    However he is not that much different to anyone else I think just more so, louder, more extreme, all or nothing, not disclosing things that are personal and upsetting for fear of being thought wanting, but doing seemingly unrelated and odd things to object and protest against the offence, it being my job then to puzzle it out with no clues. He hasn't got the hang of emotions yet but he is trying!"

  • is nice to hear that after all this time he is still fit and well, gives me hope. Also this disease explains a lot of the anger issues my 16 year old experiences. Have been told that my eldest can not have the oil, and there is no way i can control his diet out of the home.My younger 2 have adapted well to the oil and medication for addisons disease but have not told them the full extent of the disease as don't see the point in worrying them.

    Have felt a lot of guilt myself at passing this on to my boys even though it was completely beyond my control. I can only hope that they get to live long lives filled with happy memories.

  • When my son was diagnose I had lot of guilt also I went into depression for 3 months. I blame myself alot of time, for passing this awful disease onto him. Take lots of pictures of your boys it will help

  • Hello Littlelegs,

    Please read her response below:

    When my son was at his "worst", he was quite a handful ,a shock to the system and a nightmare to cope with, do you have lots of help, you have this times 3? Please don't think that it reflects on my love for my son using words like nightmare,it was a nightmare and many other words as well and sometimes it still is! The Kubler Ross book is still available,certainly on Amazon,I didn't know about it at the time. How do you cope with the anger? My son used to walk and walk for miles, and with little or no sense of direction or short term memory he was so vulnerable . Retrospect is easy but I think we aught to have made the effort to talk more,how do you do that though, talk to your child about how he has an illness which will certainly ,(when we were told) ,kill him, ridiculously young after removing all his functions? But it just goes to show they don't always get it right which is wonderful, however we mourned and fretted and all the rest for years unnecessarily ease the experts gave a fate accomple which they believed to be true as that was the extent of medical knowledge.

    Thank you for your response.

  • Hi little legs, i can relate to what your saying. my son has anger issues, he has agrressive outburts, which are becomming more frequent, you cant be with them 24/7 i had the same problems , with my son,

  • Bit of an update. My middle son is home recovering well after his bone marrow transplant. But unfortunately my youngest son is still in hospital as after his transplant he got host vs graft disease, so the transplant failed. Fortunately the donor very kindly agreed to donate again and his transplant will take place next month. Fingers crossed it works this time. My eldest had his 6 monthly MRI which showed no change so we were extremely happy, also the professors at GOSH have said as long as the younger 2 come out of this ok, they are willing to do a bone marrow on my eldest. So yes times are hard, but thankfully it's not all doom and gloom.

  • I'm glad to hear that my prayers go out to your family, and especially your sons.

  • Our son had his first changes show up on the MRI a few weeks before his fourth birthday. He was admitted for a bone marrow transplant two weeks later. He turned four in Cook Children's Hospital. He had four days of Busulfin chemo and four days of Cytoxin chemo followed by a day of rest. My youngest child was a perfect match and donated marrow for him. He was in the hospital for about a month. He experienced loss of appetite, fatigue, and received red blood cells and platelets until his new marrow started producing. His first MRI after transplant showed a slight spot of new myelin loss. He is 6 years post BMT this year with no graft vs host. His MRI's are stable. He is on target in school. He does receive speech therapy in school for stuttering. We have been very blessed. We consider our case to be the best outcome for the worst case scenario. I will keep you and your family in my prayers. If you have any questions please ask, I am happy to share any information that might help.

  • Hello Momof3,

    Thank you for getting in touch and for sharing your story with us. I am really sorry to hear about your son.

    However, I am really pleased to hear that your son has had a sucsessful BMT. Please keep us updated to how you get on. You can alternatively email us on info@aldlife.org.

    Regards

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