My 8 year old nephew was recently diagnosed with ALD and given less then 2 years of his life. Every week he is changing for the worse and I am doing anything in my power to find help and resources for my family. Can anyone out there give me any advice, whether it be drs, hospitals, or what to expect and how to help my brother his finace and their family cope with this horrible news?
In need of help, anyone out there? - Leukodystrophy Su...
Leukodystrophy Support
195 posts •
In need of help, anyone out there?
Written by
missbetters
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9 Replies
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Hi Renee,
You got in touch earlier on facebook, and I have sent you a response and another message with our contacts list attached.
I am really glad to see that you have found and used our HealthUnlocked page. I hope you will be able to get the support you deserve here.
If you would like to get in touch with a medical specialist, please send me an email (info@aldlife.org), or respond here with your address. We will then try to see if we know a medical specialist near you, and forward you their details. We hope they will be able to help you further.
I hope you have managed to check your facebook account for our messages, and I'm sorry for sending you two different messages. It is only to ensure our contacts list was securely sent to you. If you require any further support, please get in touch.
.
Regards
COwithAMNVolunteer
Judging from your location, you live near Green Bay, WI in the U.S. Is that right?
Has your brother and his fiancee asked about bone marrow transplant? Currently that is the only viable treatment for a boy like your nephew I am afraid. If the doctors think that it is possible then he needs to get the procedure as soon as possible. There are many support organisations in the US: StopALD stopald.com/ United Leukodystrophy Foundation ulf.org are two.
Lorenzo's Oil won't give any hope I am afraid.
Your brother's fiancee is a carrier of the ALD gene. She may eventually suffer symptoms but it is not life-threatening for her or even certain that she will get symptoms. She does need to be tested as she will pass the defective gene on to any further male children that she may have.
Let me know if this is of any help.
Chris
Chris,
Does my country has a organization same as in US that support ALD patients
@ Sara, thank you so much for you response, I did receive your fb message and greatly appreciate all the help. My nephew is showing much more pregression of ALD and at a faster rate then we were told from the Drs here. As we know now they are not skilled to handle a case such as my nephews. I have been in contact with the Minnesota University Medical Center Fairview, Dr Paul Orchard, and Duke University Hospital, Dr Joanne Kurtzberg. As of the moment I have not received a call back but I am "patiently" waiting, (ok maybe not, im a wreck and want answers now). I have also been in contact with the David Cry from the ALD Foundation for assistance and guidance, and also Bobby Lapan from teh STOP ALD FOUNDATION. Both of these gentlemen have given me hope to guiding my family in the right direction with helping our little Jo with this horrible disorder. Any information or doctors or help is more then appreciated and accepted. my email address i have set up for information is reachingoutforjovani@gmail.com , again, thank you so much for the response and help. ANY information is greatly appreciated, even if I already have it, becasue then i cant loose notes and contacts. Again, my deepest gratitude and thanks for all the help
sincerely,
missb
Hello Renee,
Thanks for getting back in touch. I hope you don't mind, but I added your email address to our mailing list. That way you will be able to kept updated with all the latest events and news regarding ALD and our charity.
I am in process of getting details of your nearest medical specialist. I will email these to you once I have it.
Again, if there is anything else we can do, please do not hesitate to get in touch.
Kind Regards,
Hi Sara,
Can you include me also to your mailing list too i needed help too for my son i am I Filipino
in reply to RonaldoALD
Could you send me your email address and I will add you to our mailing list.
Sara
Could you also send keep me in thd loop too. My email address is khenghui@gmail.com
I have also trouble gettimg lorenzo oil shipped to singapore as they need the local doctor prescription. Will you be able to help me? Tks.
orchard MD, Paul J.orcha001@umn.edu612-626-2313 Pediatric BMT
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