The image here is my little boy, Joshua, who was born in March 2018, and sadly passed away on 27th August of the same year. Little Joshua was born with a very rare condition called Junctional Epidermolysis Bullosa (JEB) with Pyloric Atresia. He spent his whole life at Birmingham Childrens Hospital following his suspected (and then confirmed) diagnosis, where incredible doctors and nurses tried their very best to save him. This image below is after his first surgery, which was to fix the pyloric atresia (blockage in his stomach). He was five days old here.

The operation didn't work. Doctors tried their hardest to work out why - but the reason was that Joshua's body didn't react to things the same way other babies do. In fact, none of his operations or trips to NICU worked out as expected. You see, all types of Epidermolysis Bullosa are linked to the skin not being properly formed. It is a genetic defect that means the layers of the skin are not strong. Depending on the type, depends on which layer of skin. With Josh's JEB, there was every chance he would survive, but the complexities inside of his body meant that doctors just couldn't find a way to get him to digest food on his own, and he was constantly prone to infection.

Children with EB are often referred to as butterfly children, as their skin is so delicate. Here's little Joshy man with some of his dressings on his legs. Had he survived, he would have needed dressings on multiple areas of his body throughout his life. As you can imagine, many photographs of Josh are more harrowing than this, but I thought best not share them as they can be hard to look at. He was such a brave little man.

The purpose of this fundraiser is to raise money for DEBRA charity, the main charity that supports children and adults with EB across the world.The work they are doing to try and support those living with this condition is incredible, including graft work, preventative genetics and pain relief. If you want to know more about their work, please visit https://www.debra.org.uk.

Since Josh's passing, I've done little fundraisers for Birmingham Childrens Hospital and a few other charities that helped us. However, I'm yet to do something for DEBRA.

So, I thought I'd climb Kilimanjaro. DEBRA set the fundraising target for this as just over £6,000! So this is what I'd like to raise (although frankly this is a terrifying amount to try and raise so I'm open to ideas!!) I have a lovely group of people around me who will help over the next year to raise this money, but I thought this might be a good starting point!

Thank you so much for reading our little story of my brave little man. If you are able to donate anything, it would be much appreciated! I'll update you all on my climb (it's in October 2025). For someone who struggles with the Wrekin, this should be interesting....

Thank you so much

Jenny x (below Joshua and his beloved balloon - and his dad, and Josh and myself)