50 miles for Nairn and his family

Hi, my name is Hayley and on the 22nd of December my brother and I will be walking 50 miles, from Garelochhead to Erskine bridge and back. This is to raise money for the McCulloch family, who are about to face the toughest year of their lives as their 3 year old son, Nairn, is about to receive a bone marrow transplant and endure so much more.

At a young age, Nairn was diagnosed with an incredibly rare immunodeficiency disease, XIAP (X-linked inhibitor of apoptosis protein) deficiency. It primarily affects boys (it's caused by a mutation of the X-chromosome). Only 100 boys (and a small number of girls) in the UK have been diagnosed since its discovery in 2006. More info on XIAP can be found here - https://www.gosh.nhs.uk/conditions-and-treatments/conditions-we-treat/x-linked-inhibitor-apoptosis-protein-xiap-deficiency/

A bone marrow transplant is the only, known, curative treatment for the disease.

Nairn will have to spend 6-8 weeks in the Royal Hospital for Sick Children in Glasgow to prepare for his bone marrow transplant. During this time he will receive immunosuppressant medication and parenteral nutrition (being fed via a tube). He will be confined to hospital for 18 hours a day minimum, due to the risk of infection, and will only be allowed limited visits with his mum. This marks just the beginning of his long stay in hospital.

The transplant itself will take place in Newcastle in the spring time. The process will involve chemotherapy to "kill" Nairn's existing bone marrow, followed by a transfusion of the new bone marrow from a healthy donor. The family have been advised that Nairn will need to stay in Newcastle for 4-6 months and they will, again, need to be extremely careful during that time, due to risk of infection. Unfortunately, this means the family will be separated, and Holly (mum) will not be able to work, during this time.

They have been advised there is no funding available to assist with their extended stay in Newcastle.

That is where we come in. I want to try and raise as much money as possible, so that they do not have to worry about finances and can focus on getting their family through this truly awful period.

Nairn is a beautiful young boy, who deserves the chance to live a full and healthy life. While the health professionals do their best for Nairn, we hope to bring some sense of financial security to the family during the most challenging time of their lives.

Please contribute what you can - even a small donation will make a big difference.

Thank you x