As Christmas draws near, we’re reminded of the joy and warmth that should fill our hearts. However, for EB families like ours, this time of year brings not only the anticipation of festivities, but also the harsh reality of a cost-of-living crisis that threatens Percy and Ayda’s wellbeing. Our story tells of the journey to get to their medical appointments, and the huge costs incurred along the way, both financially and emotionally.

 

 

There are only four specialist EB healthcare centres in the UK. The journey to these centres can often be 100s of miles and many uncomfortable hours of excruciating pain spent in the back of a car. The journey itself is difficult and takes careful planning. What is normally a three-to-four-hour journey for most, will take us at least seven to eight hours. These trips can also often be three or four days long. They take their toll both physically and mentally on the children.

Our nearest specialist EB centre is at Great Ormond Street Hospital in London. We live in Newquay, Cornwall and travel the near 600-mile round trip to attend their appointments multiple times every year. These trips cost over £500 each time when factoring in petrol, accommodation, parking costs… it all adds up.

We turned to DEBRA UK just after Percy was born. They have helped with financial applications for his disability living allowance and, more recently, with his transition to school. They have also supported us immensely through grants. DEBRA UK provide four categories of support grants to members, which includes helping with the costs of travel such as getting to EB hospital appointments.

The cost-of-living is affecting us all, but it is now having a long-term impact on EB families. There are thousands of EB families like us all over the UK who can’t afford the crippling costs of attending essential hospital appointments. With your donation, DEBRA UK can help more families get the specialist healthcare they so desperately need. 

DONATE TODAY

Please support DEBRA UK and the EB community this Christmas and beyond.

Thank you,

Rebecca and Jack Knight
Parents to Percy and Ayda

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*Monies raised will be used to improve quality of life for people living with EB.