My journey with DEBRA UK: a lifelong support system

I’ve been involved with DEBRA UK since I was a child. I was just one year old when DEBRA was formed and it has been a constant presence in my life, providing support and community. This blog post shares my experiences, and the incredible impact DEBRA has had on my family and me.

Early Memories and Connections

I remember the early days of the charity, from seeing the DEBRA headed paper at home when I was a teenager, to the cherished letter from another person with EB who read about my achievement of getting grade 8 in the cello. She played the piano, so she understood the challenges of living with EB, and how hard it is to do things that other people take for granted.

There wasn’t the level of support there is now, but my mum, my Gran and I always loved knowing that we were part of a community of people with EB and their families.

Growing with DEBRA

As DEBRA grew, so did my involvement. I’ve enjoyed using my professional knowledge to deliver parenting workshops at DEBRA members’ weekends. Seeing my children grow in confidence and share their experiences with other children who have just found DEBRA has been incredibly rewarding.

A true DEBRA Family

My mum was a trustee, and Debra has been a big part of her life since she retired. She has also found immense support from the DEBRA community, especially after her diagnosis of Alzheimer’s. The DEBRA members weekends is the only event where she feels fully comfortable, surrounded by families who understand the challenges of difference and additional needs. I’m comfortable there too because they help out with her as well as the children. We have made contacts with other families and learnt so much from them and one child is now comfortable in a wheelchair after my children’s persuasion! These weekends are a highlight for my children, providing support for siblings who often miss out due to their brothers’ or sisters’ needs.

Paying forward: Volunteering and Raising Awareness

Volunteering for holiday homes and spreading awareness about EB in my local community has been very fulfilling. Recent fundraising events in Cornwall, including barbecues, pub quizzes, and beer festivals, have helped support DEBRA and fund a hydrotherapy pool for my little one. One of my children even played with their band in the beer festival! I have also been asked to do an assembly at school about EB, further raising awareness.

Unbelievable Support from DEBRA

David Williams has been unbelievable. He supported me to get additional help for the children and myself – including an electric bike to help my teen get around and not feel excluded. Fans for the hot weather and a contribution towards Albi’s hydrotherapy pool.  Our previous support worker was also instrumental in getting Albi his disabled living allowance and we’re looking forward to David supporting us with an EHCP application as well as directing school to relevant training.

DEBRA makes living with EB more tolerable. It’s an amazing community that has provided lifelong support for my family and me. Thank you, DEBRA!