Son recent diagnosed with Ullrich muscular dystrophy

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  • #202928
    Son recent diagnosed with Ullrich muscular dystrophy

    Hello my name is Alex,

    I wanted to share our story of my little boy who has been recently diagnosed with ullrich muscular dystrophy. It has been a real long journey with our son Ollie. Ollie never met his motor milestones from birth. Ollie was born in 2020 when covid struck and due to this Ollie was not seen often by health visitors. When we was visited we where told Ollie was a boy and was just lazy. Ollie never sat up till he was just over 1 year old. Ollie can only bottom shuffle & uses a wheelchair daily. He struggles with eating but we have found ways to help him. Having had previous children this did not seem right. We took Ollie to the doctors as he suffers from cronic constipation. We where then reffered to a pediatrician as Ollie has adnormal facial features. We saw a pediatrician who conducted x-rays and discovered ollie has left hip dysplasia. We where then sent to Great Ormond Street hospital for treatment who have been great. Sadly Ollie was due to have surgery but due to his diagnosis of ullrich muscular dystrophy this could not go ahead awaiting sleep studies as the risks of putitng ollie under anesthesia are to great. Ollie is a happy little boy who loves being around others and playing but this recent diagnoses has come as a shock to us as Me & my wife do not carry the genetics & this has just happened with Ollie. So now we have started this journey with Ollie recent diagnosis we have lots of questions but we know sadly there is no cure for this. But we will keep postive as a family and make happy memories everyday. Thanks for ready a little bit about Ollies story & one day hopefully a treatment will be found.

    Posts: 0
    Joined: 28/05/2023
    Reply To: Son recent diagnosed with Ullrich muscular dystrophy

    Thank you so much for sharing your story, and telling us about Ollies life so far. I am so glad that you are remaining positive as there is so much to be positive about. Now you have been referred to a world famous hospital you can be assured that they will do their best to make sure Ollie leas the best life he can. I am constantly amazed about how resilient children with MD are, and how much inner strength they have. But as I am sure you realise it is still a long road ahead for you all. I hope you have already read the MDUK fact sheet here
    With the right sort of help I am sure things will improve. You and your wife will need to be strong for him to help him through the difficult times and also to make sure he does his physio exercises at home.
    AS you say there is no cure for his condition YET. There will be many medical advancements in the years to come, you never know what might be possible.
    Meantime please do keep us up to date with his progress, that can help so many others too.


    So many love songs, so little love.

    embayweather embayweather
    Posts: 8
    Joined: 02/11/2015
    Reply To: Son recent diagnosed with Ullrich muscular dystrophy

    That is a real pity about your wee lad, Alex. Here’s hoping for a cure for the youngsters! I have Becker MD and wasn’t diagnosed until aged 28, I will be 48 in a few days and still ambulant, albeit with the use of a stick or rollator.

    I guess you are lucky to have a diagnosis for the wee man so young. I look back often and consider how much easier things would have been had I known.

    Posts: 747
    Joined: 05/09/2010
    Reply To: Son recent diagnosed with Ullrich muscular dystrophy

    Hi Alex, apologies that this is a late reply, I am only just ‘rediscovering’ this site as my son is now 24 years old and I kind of fell by the wayside with the MDUK website! Your journey sounds very like ours and my heart goes out to you all. I remember Jeds diagnosis aged 8 1/2. It was devastating, being painted the grimmest of pictures for what Jeds journey through life would be.But…. Jed has done remarkably well and I would love for you to read his story, follow, share and donate. He is determined to raise money for research into Ullrich CMD, which is what your son has. Jed has organised a 24 hour gym fundraiser next weekend in London, 4-5th November. So if you are in London, please pop along and meet us all, see for yourself how well our young man is doing and chat to myself and my husband Michael. The charity will also be there supporting Jeds event

    Posts: 0
    Joined: 28/10/2023
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