South East Kent Friends of DEBRA

Contact Names: Clara and Adam Faiers or Alison Faiers

Inspired by: Darcy Faiers

What we are raising money for: Research into Dystrophic EB

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Darcy's story

South East Kent Friends of DEBRA: EB parent Clara with daughter Darcy

Darcy came into the world on the 2 September 2018 - she was put in my arms and I couldn’t believe she was actually here. It all changed so quickly - she was rushed out of the room and all we were told was that she just needed some help breathing and that everything was fine. Nine hours later we were finally told that our tiny baby was missing skin from her leg, foot, ears, nose and her lips.

Two days later we had two nurses from Great Ormond Street Hospital come down and pretty much diagnose Darcy on the spot with Dominant Dystrophic EB - it was so overwhelming and pretty much unbearable.

It has been so hard adjusting to life. Everything has to be so carefully thought through and every day we are faced with something different. It has taken so long to learn what we can and can’t do with Darcy as she is so fragile. It was devastating at first coming to terms with the fact we had to watch our little girl in so much pain and even something like giving her a hug to comfort her could do so much damage.

We had to grieve for the child and the life we thought we were going to have.

One of the bigger battles we’ve had to contend with is Darcy’s feeding. Her EB affects her mouth so badly to the point she was absolutely terrified of a bottle coming anywhere near her and she was fed through a tube from about five months old. So not only did we have to learn wound care and dressings we also had to learn how to fit and feed Darcy through her tube. We’ve managed to get her off the tube just before her first birthday but we always live in fear of her stopping feeding again or her weight dropping too much so we always know she might need it again.

We’ve also had to learn to accept that people are going to stare and people are going to assume things. Sometimes it would be nice to just do the food shopping without someone asking what’s happened to our baby - sometimes you can feel so brave about it and want to educate people and other days you just want to shut the world out.

Darcy is determined to show us every day that she will never be defined by her EB. She has such a huge personality for such a small girl and has taught us so much in her first year of life. She loves nothing more than spending time playing with her big sister Eliza and she’s animal mad. She’s a real water baby and loves our weekly swimming at our local children’s hospice.

As soon as Darcy was diagnosed we were in touch with DEBRA and they helped us realise that we were not alone. They provided us with sheep skin, bamboo baby grows and special needs bottles, things that seem so small made a massive difference to us.

It sounds silly but they gave us the confidence to do normal things like lay our baby in the cot because the sheep skin provided a soft padding for her and the baby grows allowed us to dress her for the first time and the bottles gave Darcy her first proper milk feed.

Later on they helped us out with benefit forms with my partner having to have so much time away from work to adjust to our new lives. We got through our savings pot so quickly and being self-employed money begun to become tight. Without Nathalie from DEBRA coming to help with the forms we would have probably ended up in financial trouble.

When we were nervous going up to Great Ormond Street Hospital for one of our first consultations walking in and seeing Nathalie there to welcome and support us made such a difference and seeing that familiar face gave us so much comfort. She is always at the end of the phone and nothing is ever too much.

We can’t wait for Darcy to get a bit older and can travel better so we can get more involved with DEBRA Members’ Events - it will be so nice to be around other families who just get it and for our girls to mix with other children just like Darcy.

The support DEBRA have provided for us has been amazing, they’ve been with us every step of the way and as I said we can’t wait to get stuck in with more as Darcy gets older.

Reading about all the trials that are taking place is exciting and knowing that the money we help raise could find a cure. I hope that one day we get that call to say they’ve found a cure or some treatment that will mean that our little girl and all the other sufferers can live a day without pain.

Clara, Darcy’s mum

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