Wish to get in contact to other grandparents

Good morning,

I am a German grandmother of a four year old boy with childhood X-ALD. Actually the physicians are searching the data banks for a bone mark donor and we are waiting...

I wish to get in contact to other grandparents, because I want to change experiences how they supported their sons and daugthers and grandchilds through the time of the transplantation. My daughter shows now a lot of stress symptoms and I want to support her and her family as good as possible and I wish to have anybody out there with whom I can talk about my feelings.

My English is not the best, but I am working on it :-)

Here in Germany it is now /:16 in the morning and so I wish for you alll around this world a start in a good and easygoing day

with best wishes,


Hi Simone,
It is true human trials are the same where ever we live in this world. I write to you from Trinidad and Tobago. My son was diagnosed 17 yrs ago, I was told transplant nor gene replacement wasn’t a option, I continue to take care of him on the bed, he is tube fed for the past 15 yrs. We are the only known family with ALD in Trinidad, no support is hard but God is good and I will trust him till the end.

Dear Andrea,

do you have your son at home?Do you do all the care for him yourself?

Here in Germany are some more families with ALD and we have a good support. Last week the physicians wrote a new MRT from my daugther sons brain and we are waiting for the result. They said Liaison in his brain did not became really greater, but they have to measure it exactly.

The physicians want to transplant with bone mark, but since today they culdn't found a donnor and so we are waiting.

I am very afraid of the bone mark transplantation, because there can be a lot of complications.

Do you have more children? If have four. My oldest son died at birth, my daughters are 32 and 27 and my youngest son is 18.

I think nobody knows which way God for us changes. Perhaps we can understand it one day.

I wish you a good day with your son.

God bless you,