My 6 years old son with ALD - Leukodystrophy Su...

Leukodystrophy Support

195 posts•

My 6 years old son with ALD

10 years ago•7 Replies

My son transplant was not successful and doctors do not rexommend a second transplant. My son is very weak after the. transplant and could not lift his head and has difficulty swallowing. He is now on NG tube for his daily intake. can anyone tell me how do you know whether he can still see ? when i talk to him he dont look at me and he jus stare blankly at the corner of his eyes.

I forgot to mention that his lores score was 13 when he had his transplant. I hate to ask and it really hurts, how long do i have with my son?

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KhengHui

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7 Replies

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noahsgramma5810 years ago

Im so sorry you are going through this. No child is the same do its hard to say how long. It's usually some other infection that takes him. My son did not have the bmt and was older but it was finally pneumonia that took his life this year. Enjoy every minute you have god bless you

KhengHui• in reply tonoahsgramma5810 years ago

tks for your reply and sorry to hear about your son. i am still feeling sad over this and what is the quality of life we are talking about for ALD?

noahsgramma58• in reply toKhengHui10 years ago

Unfortunately the quality of life is terrible by the time my son passed he couldn't walk or talk or see and had a feeding tube its heartbreaking

bluesweets10 years ago

All you can do is cherish every day that you have with your son. My son didn't have a bmt either he passed away last November. He lived 10 years with ald. It was a very hard battle to watch him go threw everything he lost the abilatily to walk, talk, he was in briefs all the time. He still could eat but he also had a g-tube for all of his medicine and water flushes. You just never know how long you will have with your son.

KarenH10 years ago

My son had BMT 12 years ago but has sadly deteriorated to the point of being totally disabled and reliant on others for everything, he still laughs and smiles, his quality of life is not what I would have ever wanted for him but he is comfortable for the main part and we do everything we can to make the most of every day we have with him. ALD is such a cruel disease and no one can say how long your son will be with you just try to make the best of life as it is now, that takes a lot of change and is heart breaking. I have also lost another son to ALD so have been through it already. If you need any further information please feel free to contact me on Karen@aldlife.org I am the Project Manager for the UK charity ALD Life. Are you in the UK?

KhengHui• in reply toKarenH10 years ago

Tks all for the reply. It's heartbreaking and I am from Singapore. It's a lot of change not only for me but the whole family. Everyday I try to be strong for him and at times I still cry for him.

KarenH• in reply toKhengHui10 years ago

We all still cry for what we have lost, our beautiful sons, stay strong for your son but it is fine to get upset, no one should have to watch their son go through this horrific disease. Take care

My 6 years old son with ALD - Leukodystrophy Su...

Leukodystrophy Support

My 6 years old son with ALD

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