Climbing Ben Nevis for Darcy
Darcy was born on the 2nd September 2018 we were so excited to be completing our family with another little girl and had so many plans for the future but nothing could of prepared us for everything that happened next.
Darcy was born missing skin pretty much all over. The worst being missing all the skin from her foot to her knee just red raw flesh. She was whisked away and no one knew what was wrong or what was going to happen next all we knew was to prepare for the worst.
After a few days in hospital we got her diagnosis dystrophic epidermolysis bullosa with it being so rare her care was handed to great ormond street hospital.
Darcy is amazing she’s funny and smart and so beautiful but she has never ever know a day without excruciating pain. Darcy’s skin will come off with the slightest touch leaving wounds similar to third degree burns there is no cure and no treatment all we can do is treat her wounds and do daily bandage changes keeping her on a constant flow of medications in a attempt to keep her as comfortable as possible. Darcy’s dressing changes are agonising for the whole family as a parent all you want to do is keep your child out of pain and harm yet we’re the once’s that have to put her through it by lancing her blisters, pulling of dressings that are stuck to her skin, cleaning her wounds and bandaging her up again. The whole thing can take us up to 3 hours, 3 hours daily of watching your child scream in agony really takes it toll.
There is not a single bit of Darcy’s that Is not effected by her eb Darcy can’t be held, move, sleep or even eat like a normal baby.
Recently Darcy has had to undergo a dilation on her throat as the scar tissue on her oesophagus had tightened so much she begun to struggle even swallowing her saliva.
So much research is being done to find a cure but the reality is darcy is deteriorating fast and she’s only 17 months old. Every time darcy gets a new wound or blister it makes her skin even weaker and more fragile meaning that it’s another spot that will never heal properly again.
This is why I’ve made the crazy decision to climb Ben Nevis this year in an attempt to raise some money for darcy to have her very own medical room built, a place that’s sterile and safe but also private for her with everything she needs in the one room, a room that we can shut the door on at the end of the evening and be done with dressing changes until the next day.
It will come as no surprise to you that I am not a natural athlete but I watch my beautiful daughter face the biggest challenges life can throw at her so bravely and always with a beautiful smile on her face that I have no other option than to push on and not complain!
Some of my friends and family are taking on the challenge on with me so please support us by donating whatever you can!
Below we have attached some pictures of what Darcy’s dealing with on a daily basis they’re not easy to look at but just shows why having a clean safe space to dress such horrific wounds will make our lives so much easier.
