Ophelia's Fundraiser

In November 2020, Rhys and Hannah found out that their 5-month-old daughter, Ophelia, was diagnosed with an incredibly rare genetic disease, known as Canavan disease.

Canavan disease is a rare inherited disorder that damages the ability of nerve cells in the brain to send and receive messages. Affected infants appear normal for the first few months of life, but by age 3 to 5 months, problems with development become noticeable usually not developing motor skills. Other common features of this condition include weak muscle tone, an unusually large head size and irritability. Feeding and swallowing difficulties, seizures, and sleep disturbances may also develop. Currently, there are no treatments for Canavan nor is it very well known as an illness.

As a result of the progressive nature of Canavan Disease, the complex needs of Ophelia continue to increase. In order to ensure her safety and well-being, her family is in the process of constructing a downstairs extension to include a bedroom and a specialised wet room equipped with the necessary equipment for her daily care. While a portion of the costs will be covered by a local council grant, the family still needs to raise a significant amount to fully fund the project. All proceeds from this event will go towards supporting Ophelia, with any remaining funds being donated to Keech Hospice Care, where Ophelia benefits from a number of their child services.