I hate to ask but i need to know…how long after the disease sets in do male children have before they lose the battle with this disease?

My son was diagnosed in January and is already showing signs of organ failure and it is only June. He has a G-Tube but has already aspirated once I just don't know much about this disease or have anyone to talk to or ask questions.

19 Replies

  • Hi mhardy, My son was diagnosed with ald April 16, 2003 and he passed away November 1, 2013. It was a very long hard battle. If you have anymore questions just let me know. Terry

  • Is there symptoms I should look out for he had a mini stroke this morning according to our hospice nurse. He has aspirated already and has organ failure and is having seizures while on anti seizure medication

  • my son had 3 grand mal seizures over the 10 years. He muscles were very tight. He couldn't walk or talk except he would make baby noises. He had to have his food puree and his liquids thicken. He could not feed himself. He ate right up to 21 days before he passed. He aspirated on a drink. James did have a g-tube for his meds and water flushes. And if he didn't eat more then 50% then he would get a supplement. And he could not hold his bowels or urine so he was in briefs all the time.

  • He has not spoken since before Christmas has been in diapers since Christmas he has a g tube for feeding refuses to take anything by mouth. He doesn't even make the baby noises anymore. It breaks my heart to know he got this horrible disease from me. He has progressed so rapidly over the past 7 months.

  • My son progressed very fast also. The doctors give him 18 months to 3 years to live. He proof them wrong. Can he have a bmt? My son didn't get one he was to far progressed by the time he was diagnosed. I use to blame myself for the longest time. But it isn't our faults. I had no idea I was a carrier. No one else in my family has every had this horrible disease.

  • No he was already to far by the time we were able to get him in to see a specialist. I blame a lot of people for not properly diagnosing my son but honestly I just want my little boy back. We have three girls as we'll but no one will test them for ethical reasons or whatever

  • I know the feeling it took the doctors a year and half before James was diagnose. Where are you from?

  • We are currently stationed in Washington state

  • I am very surprise that no one will test your girls. How old is your son

  • He just turned 8 in May

  • The Dr told me they would not test daughters until they are 18. They say that is when they will make decisions on whether or not to have children. I think it should be much earlier for piece of mind and precautionary measures.

  • The doctors here say there are no cases where the disease effects females so they won't test my girls even though one of them is showing the same symptoms as my son. We are the parents we have final day and I see no issue with testing them to be proactive and not reactive

  • My son was diagnosed shortly before his 12 birthday

  • Unfortunately, there is no way to tell how long a child will survive once symptoms have begun. Some boys will pass quickly within a year of diagnosis and others can go on into their twenties or further. My own son lived for 12 years until the age of 19 with chronic symptoms and disability, and we feel he had a good quality of life. I wish there was something more concrete and reassuring I could tell you, but you will just have to deal with this one day at a time and be as positive as you possibly can. Do get in touch if you need any support, information or just need to vent and we will try and help to the best of our ability. As regards your daughters, in some cases you can press for testing before the age of 18, but success usually depends on the individual, the consultant and the area you are in. It may be an idea for you to ask others if they’ve managed to successfully test daughters and how they managed this, then you will have a precedent to take to your own geneticist. We can assist with this by emailing our entire database for you if you wish.

  • Our son was diagnosed in November 2013 after 6 months of me taking him to eye specialists etc. He passed away 5 weeks ago so 6 months after he was diagnosed. His progression was extremely fast and ended very quickly with a brain swell. It is so different for everyone. I wish you many happy moments with your boy. Im so sorry.

  • Hi kasw,

    Thank you for your response. I am really sorry to read about your son. If you would like any support, please feel free to email our new Patient Liaison Officer on eoghan@aldlife.org.


  • Thanks Sara, We live in New Zealand and we have a wonderful team here, at the childrens hospital.

  • Glad to hear it

  • my son was diagnosed when he was 5 and we lost him when he was 6

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