Donating to children living with NF1

On April the 6th I will be taking part in a 10k race and I hope to raise some money for NF1.

Neurofibromatosis type 1 (NF1) is a genetic condition that causes tumours to grow along your nerves. The tumours are usually non-cancerous (benign) but may cause a range of symptoms.

Our son Xavier was diagnosed with NF1 when he was around 1 years old.

NF1 is a rare disorder with only 1 in 300 babies being born with the disorder.

So far, Xavier seems to be affected with little of the side effects caused by NF1.

However we don’t know how he will be affected in the future.

Xavier will have Nf1 for life, meaning his own children will be likely to have the disorder .

We are hopeful he will continue to live just the way he is now, the happiest little soul which anyone that knows him can confirm!

As Xavier’s parents, we will be reliant on continuing research, funding and the support systems of the few clinics in Ireland that offer families like ourselves the care and information needed for people

living with the disorder .

“At NF Ireland, our aim is to be a voice for NF patients and their families. Our primary aim is to inform sufferers and their families of the disorder, supporting them and letting them know they are not alone with the condition. We provide support and information on Neurofibromatosis to patients, families, and healthcare providers. Depending on the individual needs of our members we do our very best to provide them with the most up to date information on their condition.”

As mentioned already, I will be taking part in a 10k race and I would love to raise some money to help raise awareness and support for Nf1 Ireland.

Any donation will help towards supporting all of the families living with the disorder, who knows maybe in the future with the raising of awareness there could be a cure, which would be a dream come true.