Bombshell

niklepic

Well yesterday was diagnosis day for ds. He has duchenne muscular dystrophy. There's no cure. It is likely that he will be confined to a wheelchair by about 8-11 and as its life shortening we could possibly loose him in his late teens/early 20's (although with recent medical advances some boys are living longer). He's currently 5 years old.

I know there are a lot of people on here who have children with disabilities. Is there any advice that you can give me?

We've got a lady coming out to see us on Friday who'll give us more information and is going to get in touch with him school to see how we can help him.

Feel completely lost

carolpinkdreamer

Oh my gosh, my heart goes out to you. Love every minute with your precious baby x x x x x

Bennifred

I don't have any advice to give you, niklepic - I just wanted to say I'm so sorry, what a blow.:( Very best wishes to you and your family.

Threebabes

Again nothing constructive to say. But as someone as said cherish your time with your son. Big hugs hun x

Mojisola

Give it time to sink in - you'll still be in shock at the moment. I'm so sorry for what you're going through.

Find out if there's a local society near you. Other parents will be very supportive and will pass on lots of valuable information.

From a practical point of view, if you've written a will, it would be worth revising it in the light of this knowledge so that, if anything happened to you, your son's needs will be catered for. If you haven't got a will, start the process.

Bloomin_Freezing2

How awful for you all. We have had 2 very poorly boys in our family, one that we sadly lost aged 7 and one diagnosed with leukemia aged 2. He has suffered many side effects from the chemo and with every new diagnosis something terrible to deal with and get our heads around.

It will take a while for you all to come to terms with this, your visitor on friday will help you a lot i'm sure. Make sure you write down any questions between now and then and also have someone with you when she visits as it'll be hard to take everything in and you may forget some things. Having someone else there to help remember things will be good I think.

Big hugs to you and your family. x

Caroline_a

Hugs from me too ((hug)). There was a little boy near me when my elder 2 kids were young who was diagnosed with the same thing. He was the same age as Daughter No 2, and as they grew up the difference in development was very different. He was diagnosed at around aged 3 I think. I always remember what a happy little boy he was, not an unkind bone in his body. He had an older sister too, maybe 4 years older, and she became his champion.

We moved around 3 years after he was diagnosed so I didnt know what happened to him in the end. Stay strong for the family, but I'm sure I speak for the rest of us that, if you want to sound off, we're all around to hold your hand :grouphug:

SUESMITH_2

lots of hugs, i used to work with a lady who worked with this and did research into it.

emmaBZ

hi sorry for your news, my sister has muscular dystrophy and is now 25 ( i know it affects boys and girls differently ) shes brilliant a fully qualified hairdresser, own house ect, when she was little the physio wanted to put her in a wheelchair aged around 8 she flatly refused ! and still manages to get about ok i think if she had gone in the chair she would not be able to walk at all now as she would have no strength left in her legs atall...obviously do whatevers best for your son, but i firmly believe that as my sister kept on walking about ( despite falling over quite a lot ) it helped her to strengthen the muscles in her legs more....

my thoughts are with you xx

MyRubyRed

Love to you. sweetheart. My cousin's boy was diagnosed with the same. He did need use of a wheelchair but not until his late teens. Sadly he passed at age 25 but treatment is improving all the time. Be strong xx

CG77

My goodness. I have no idea what you must be going through but as a Mummy of a 4 yr old boy I read your news with tears streaming for you and your family. I know in your position life right now would be totally unbearable for me. All I can do is wish you strength at this very hard time as you try to deal with the news and many, many years of smiles and laughter for you to cherish with your precious little fella.

My thoughts are with you.

CG. x