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10 year old due a bone marrow transplant

Samantha92Samantha92
in Pre-transplant

My son 10years old was diagnosed with lysinuric protein intolerance (LPI) a very rare multi organ metabolic disease in August 2024 , in which he had a gastrostomy placed and was put on a protein restricted diet and medications 3x a day. Every 6 months they have been checking his organs and his lungs have got bad , he has been diagnosed with PAP lung disease. He has been referred to Great ormand Street hospital for a bone marrow transplant in May. This "treatment" has been done little/if at all on a person let alone child with his underlined condition. They are hoping that it helps produce healthy cells in the lungs to "eat up" the protein laying in them and there for reverse the life threatening condition PAP. He also has high adhd so this is going to be very hard as it is.They have told us we will be in for at least 2 months. Is there any advice anyone can give me about anything at all as this is all new to us. Thank you in advance.

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Comments

  • Liam_at_AnthonyNolanLiam_at_AnthonyNolan
    Hi Samantha92, I am Liam and I work at Anthony Nolan. I just wanted to message and hopefully be able to give you a little advice, from me and from our CYP CNS that I spoke to as well. First of all I want to acknowledge everything that is going on with your sons health, it sounds like it has been very complicated and difficult.

    The best thing to do is prepare well for isolation, so make sure your son has all some things to entertain, comfort and pass the time with. But remember to bring those things for yourself too.

    We have our grants available to anyone having a stem cell transplant, you can speak to your healthcare team about this and they can start the process if you fit the criteria.

    We have our Telephone Emotional Support Service available to you as well - anyone over 18 and affected by stem cell transplant can access this. Call our helpline on 0303 303 0303 and choose option 3 to speak to us.

    We also have lots of accredited patient information on our website that you can read - another piece of advice would be to stay away from googling things as it can create unwarranted worry.

    Let me know if this is helpful and if you have any further questions.

    All the best
    Liam
    Samantha92
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  • Samantha92Samantha92

    Good morning,


    Thank you for your reply. I havnt heard of the grant and im not sure if the nurses would have time to complete the request but that you i appreciate you bringing it to my attention.

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