Hi. My name is Paula and I am fundraising for a family very close to me.

Harley is 10 weeks old and sadly from birth has been very poorly and after many challenging weeks he has finally been given a diagnosis.

Harley has a very rare condition called Ipex Syndrome. This condition in babies is a severe autoimmune condition that requires a combination of supportive care and immune suppression, with hematopoetic stem cell transplantation.

There are only 300 cases of Ipex Syndrome worldwide.

This condition brings with it many other health complications.

Harley’s mummy spends 24hrs a day in hospital with him by his bedside. She also has an older child called Hugo who is 1 years old.

Hugo is being cared for by his grandma who has given up her job as a paramedic to care for him and to support her daughter and Harley.

This family are going through the toughest of times and any help is greatly appreciated to make this journey just that little bit easier.

Thank you for taking the time to read.