As the longest nights of the year draw in, some families face a darkness far deeper than night itself.
Last Christmas, instead of celebrating, Ben and Alice were terrified. Their newborn daughter, Darcie, was missing skin on her tiny wrists. Her nails hadn’t formed. No one knew why.
After countless hospital visits, they received a diagnosis: epidermolysis bullosa (EB) – a rare and painful condition that makes skin as fragile as a butterfly’s wing. Darcie has one of the most severe forms, affecting not just her skin, but her internal organs too.
Doctors told them she may not live past toddlerhood.
“Our bubble of joy shattered into a million pieces. We needed help.”
That help came from DEBRA
Thanks to DEBRA’s EB Community Support Team, Ben and Alice received:
- Seam-free clothing so Darcie could wear pretty outfits without pain
- Sheepskin liners to protect her delicate skin
- A changing table to ease the strain on their backs
- Emotional support from their lifeline, Amelia
“Before DEBRA, we had to dress her in clothes turned inside out. Now she looks like any other baby – and that means the world to us.”
Your donation can be a light in the darkness
This winter, you can help more families like Darcie’s. Your gift could help DEBRA provide:
- Specialist items to ease daily pain
- Emotional support for parents facing unimaginable challenges
- Hope for a future with treatments and a cure
What your donation could fund
- £10 could buy a soft weaning spoon and a specialist toothbrush for a baby like Darcie to help avoid further damage inside the mouth.
- £25 could help fund an EB Community Support Manager to provide support services and emotional support for families and individuals affected by EB.
- £50 could help fund life-changing research into treatments for all types of EB, to provide relief from the pain and itch and hope for the future.
Like a candle, Darcie’s life may only burn for a short time. But while it does, her parents want to fill it with warmth, love and light.
Will you help bring light to the longest nights?
Donate now and be a beacon of hope for families living with EB.
Funds raised for DEBRA help to provide support services that aim to improve quality of life for people living with all forms of EB. They also help fund research into future treatments.