My Daughter Reese (4) has MLD.
Hi my daughter has MLD she is 26 years old. She was 9 years old when we was told. I have her hear at home with me and i tell her every day to fite it to the end and give her all the love in the world. If you would like to talk you can E-Mail me at sandesrey@yahoo.com. I now its a lot to to take in.
Hi 26.
Thank you very much for your reply. I can see that our young ones have a familiar diagnosis. And I know we have started a long and difficult journey. I must say that we are not surprised or totally shocked by the diagnosis as we have seen the problems coming - and everything just getting worse. In a way it is a relief to have the explanation.
Our son Peter is still quite well and we enjoy every day wiyh him. He has a Mick key to support him with nutrition and he still walks with his rollator. He talks and he is full of fun and has a humoristic attitude to life. But we know hard times lie ahead and there will be a lot of problems to deal with and decisions to take.
I really dont know what I am seeking - but I love to hear from someone who is 26 and still going. But God knows it is a tough journey.
Bkabo
Hi, I am Glade you son is still able to talk. anchorage him to keep talking even when it gets hard to under stand him and to keep moveing his lags. That was the first thing my Daughter lost. I try to keep her laughing and i move her arms and legs all the time so they wont draw up. What stage is you son? Elaina is Juvenile MLD. Thank you for righting back. Try and stay strong. I will keep you in my prayers.
We just found out that our little boy has MLD as well, he is leaving tomorrow to start his treatments at Duke University. It is taking all of my strength to stay strong for him. I'm grateful that this website is here, it has helped a lot
I am so sorry to read that another child is diagnosed with this aweful disease :(
Do you have a caringbrige site (www.caringbridge.org)? If not, it is a great thing to have to keep friends and family informed.
Also, another great resource for support is www.mldfamily.org. You can join the discussion list. It is absolutly invauable!
Good luck in Duke. We went down, but Reese was not elegible. Their is a little guy Sam down there that just went thru the BMT.
Did you contact Dr. Escolar? She is preparing for the upcoming Enzyme trial. Your son might be an excellente candidate!
Please visit Reese's Caringbridge page @ www.carinbridge.org/visit/reesebehnken
God bless and good luck,
Kim
Kim,
found ya again, i swear we look at the same stuff on the net!
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