10 year old due a bone marrow 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.