Newborn baby Ray wears mittens to protect her fragile skin.

Contact names: Danielle Keeble

Inspired by: Ray Keeble

What we are raising money for: Wherever the need is greatest

 

Ray's story

When my daughter was born in  July 2020 with EB, my heart was already broken into a million pieces. My Dad had passed away due to COVID-19 when I was 6 months pregnant and he was, quite simply, my best friend. His light lives on in my beautiful baby Ray, who is named after him. After the devastation of losing my Dad, I did everything I could to focus on Ray. When the midwife first passed her to me, I knew something wasn’t right. I noticed a little hole in her hand and wounds all down her legs.

It took just 24 hours for a specialist EB Great Ormond Street Hospital nurse to visit. When EB was first mentioned, I was in complete shock, I had never heard of the condition before and had an agonising wait to find out what kind of life my baby would face. Even now, Ray’s type of EB hasn’t been diagnosed, as she is displaying symptoms for multiple types, leaving her with an uncertain future.

Ray had to overcome lots of challenges during her first few weeks, including a skin infection that left little ‘milk spots’ down the side of her face, her tiny fingernails would drop off very easily and you could see the blistering that had occurred around her nose whilst in the womb.

I began to think about the pain she must have been in. However even through relentless testing, hospital appointments and the constant agonising pain her blisters cause – Ray remains a happy baby. She giggles with her older sisters and her resilience amazes me every single day.

I had never been one to ask for help but she has always been on hand, at the end of the phone, to give me the emotional support I so desperately needed.

Despite this, there have been many times when coping with her EB has been overwhelming and Amelia has been a godsend. I had never been one to ask for help but she has always been on hand, at the end of the phone, to give me the emotional support I so desperately needed.

She has helped me with essential practical things like finding the right clothes for Ray – seamless so it doesn’t damage her skin - and sourcing a sheepskin liner for her pram to help protect her fragile skin when travelling. She also arranged for me to have a DEBRA support grant so I could afford a special Dyson fan for Ray. The high temperatures this summer were causing her skin to blister even more, and this made a huge difference in terms of keeping her cool throughout the heat. The fan also helps me to dry Ray’s delicate skin after a bath as it is gentler than using a towel which can cause all kinds of damage.

I am incredibly grateful for Amelia’s support; she makes sure I never feel alone and when things were scary and unknown, she gave me the strength I needed.

- Danielle, Ray's mum