When Nicola and Harry were married, they asked their guests to donate to their local children's hospice in lieu of wedding gifts.

A couple of years later, in March 2020, the couple were delighted to welcome their first child, Rudy. But at only 8 weeks old, Rudy began having seizures. He was initially diagnosed with epilepsy, and then matched with an extremely rare genetic condition known as MCAHS-1. A mutation of the gene P.I.G.N.1 only discovered in 2014.

From local supporters, the couple now found themselves as service users of their local children's hospice.

"Despite feeling completely heartbroken and railroaded when we received his diagnosis, the hospice welcomed us in. They just got it. And we just knew we were in very safe, and very expert hands." says Nicola. "The hospice is somewhere we can take Rudy for respite care and know that he will be safe, happy and expertly cared for. We can go to classes there and feel 'normal,' at ease, and supported."

Rudy still visits his local hospice and benefits from a range of therapeutic services including hydrotherapy, music therapy, yoga and physiotherapy, as well as respite care.

"The hospice really is a very special place and is invaluable to us as a family."

Rudy is stable and doing well and the family remain big supporters of the hospice.