Louie's Story

Louie is 5 years old and has a rare genetic condition called XIAP deficiency, this condition currently only effects 100 people in the whole world.

Louie spent 7 months in Great Ormond Street Hospital in 2023 due to having a bone marrow transplant he had a complicated transplant and sadly developed a brain infection called HHV6.

This unfortunately meant Louie has had to re learn how to walk, talk and do literally everything again.

Louie originally underwent testing when he was just 4 months old & has spent the majority of his life in & out of hospital due to him being immune compromised & developing infections.

Unfortunately we got the devasting news that Louie needs another Bone Marrow Transplant due to his donor cells dropping, hyperinflammatory & increased risk of him developing HLH. His second Bone Marrow Transplant will be early next year.

We’d like to thank everyone at Ben Saunders Foundation for granting us this beautiful holiday.