Darcie’s story: finding light in the darkest nights

“We want to give Darcie the best care that we can, for however long that may be.”  

We’re Alice and Ben, parents to Darcie and this is Darcie’s story.

As the longest nights of the year draw in, families like ours face a darkness far deeper than night itself. 

For us and for many, the festive period is meant to be a time of joy, but last year, our world was turned upside down.   

Darcie arrived just days before Christmas. But instead of celebrating, we were terrified. Her tiny wrists were missing skin, her nails hadn’t formed, and no one knew why. 

After countless hospital visits, we finally got an answer. We learned she had epidermolysis bullosa (EB) or ‘butterfly skin,’ and her skin was as fragile as a butterfly’s wing. At this point we didn’t know what type, but deep down we feared the worst.  

Six days later, our fears were confirmed. Darcie has one of the most severe forms – junctional severe EB affecting her internal organs as well as her delicate skin. Doctors told us she has a low chance of living past toddlerhood.   

That’s when our world fell apart.  

Like a candle, Darcie’s life may only burn for a short time but while it does, we want to fill it with warmth, love, and as little pain as possible.

As her mum, I felt sick. I cried constantly. As her dad, it took me a long time to process. I struggled to bond with her, afraid I might hurt her, or that I’d get hurt myself. Our bubble of joy shattered into a million pieces.  We needed help. 

Then DEBRA came into our lives.

Through the longest, darkest of nights, DEBRA has been our guiding light helping us care for Darcie, giving us moments of peace in the pain. For families facing the unimaginable, DEBRA is that light of hope in the darkness.  

Through DEBRA’s EB Community Support Team, we met Amelia – our lifeline. She helped us access support grants for essential items like a changing table to ease the strain on our backs, sheepskin liners to protect Darcie’s delicate skin, and seam-free clothing so she could finally wear the pretty outfits she deserves, without pain. 

Before DEBRA, we had to dress her in clothes turned inside out. People would ask, “Do you know your baby’s clothes are on inside out?”  

Now, she looks like any other baby, and that means the world to us. 

It’s been invaluable to have DEBRA and Amelia by our side, every step of the way helping us with Darcie’s journey through EB. Without DEBRA, Darcie’s life wouldn’t be as rich, DEBRA is our guiding light thanks to the kindness of supporters.

But there is still so much more to do. More families like ours are waiting for help. Parents who do not know how they will afford the specialist items their child needs, who feel alone in the darkest moments, or who need hope of a treatment or cure in the future.  

This winter, you can help more families like ours find light in the darkness.   

Your generosity could ensure DEBRA’s EB Community Support Team is there for families like ours – day and night and be a beacon of hope against the unimaginable.    

Thank you for reading Darcie’s story. Thank you for helping families like ours find light in the darkness.

Ben and Alice
Darcie’s parents