My name is logan and as many of you are aware I have a few (ok, maybe alot) of medical conditions which I've lived with since I was born. They think I have VACTERL association and I also have a very rare genetic condition, so rare infact I'm still undiagnosed! I have a few heart conditions (even after open heart surgery) , scoliosis, hearing loss, hypermobility and a musculoskeletal disorder to name a few but the list is a bit lengthy to carry on. 

Because I have a 'rare disease' I am lucky enough to have been given my very own nurse called Sarah. She is amazing, she's one of a kind and I don't think she's realises just how important she is to me, my mum and my family. I have to see 14 different consultants at the hospital and arranging all these appointments can be tricky, along with meetings at school and appointments in the community. Sarah arranges everything, she's like my very own PA! And she does a much better job than my mum used to do!l last year we turned up to two appointments a whole week early thanks to my mums organisation skills so I'm very glad Sarah has taken over ☺️ Sarah visits my school regularly and keeps them up to date with how I'm getting on medically so they can tailor my learning around my health and she's also helped apply for my ehcp plan more recently! Sarah is there when my mum needs to talk to someone who just understands the complexity of my health and she's also there when mum needs to have a good cry and a rant if I've lost my hearing aid again (I don't know what the problem is, without my hearing aid in i can't hear her nag as much 🙄) . She also attends appointments with us so mum has support, she chases blood test results and also sorts any equipment I need. She arranges fun days out away from the hospital and is always there for all of us no matter what. 

Before we had Sarah things were tough, appointments were all over the place and there was no one to turn to who understood. Without Sarah we would be back at square one getting lost in the system. 

The Roald Dahl Charity funds rare disease nurses. Without the charity Sarah wouldn't exist but more importantly without donations the charity wouldn't exist! leaving thousands of children like me with no support. Words can't quite describe how lost we would feel if we didn't have sarah so I am participating in the 2.6 challenge to raise money for this amazing, one of its kind charity!! 

I have 26 minutes to build 26 pirate ships!! All from duplo bricks! I love pirates and I love duplo so what better than a duplo ship!!

Please please if you could donate even a £1 to this amazing charity I would be so thankful, as without my nurse my journey would be a lot harder than it already is. It's also my birthday on the 1st of May so that's a good enough reason to donate for me 😊

Thanks guys! Love logan 

Xx