Hi everyone 

My 8-year-old brother Archie was diagnosed around a year ago now with Scleroderma a rare auto-immune disease.

 Scleroderma is an umbrella term that refers to the various types of this rare and very complex condition. 

Archie has parry Romberg syndrome, which affects 1 out of 250,000 people. Information on this disease is very minimal, there is no cure and no way to reverse any damage that has already occurred on the right side of Archies face. 

Archie was very lucky in the sense that this disease was found very early on. he had to have biopsies, CT scans, ultrasounds, X rays, and lots of bloods. 

He was then admitted into hospital to have a 3-day iv steroid infusion to try and kill of his immune system and began taking steroid tablets every day, he was also started on methotrexate injections once a week and fortnightly blood tests. 

Around 3-4 months after the first steroid infusion Archie had to go back into hospital for another infusion as the disease was still causing more damage. The disease is now being slowed down with the methotrexate weekly. 

He is under an amazing team at great Ormond Street hospital who specialise in this illness. 

Archie is now waiting to have fat transfer surgery to try and even his face out a bit, this will be a process that will need to be repeated and possibly in time he may need to have bone reconstruction Aswell. 

He has had a rough year with all the tests and treatments for a little boy his age, it’s hard to try and explain to him what is happening when we don’t really understand it ourselves. 

He’s been so brave through all this so far but there is still a very long road ahead for him.

 So on the 2nd of September I will be travelling 850miles through Europe with my bike, To try raise money for the scleroderma & Raynaud’s UK Charity so they can help find a cure so no more young children have to go through the same thing as my little brother. They invest in research, improving awareness and understanding of the conditions. Thankyou