April

April is a three years old girl who has, but is not defined by, mps1 (Hurlers Syndrome). This is a genetic condition which affects 1/100,000 people. As part of The Rare Project we are highlighting April and her condition.

April is a brave and determined little character, so friendly and quirky, she charms everyone who meets her.  She forever wants to play out in the garden or at the park and loves mud and puddles and paint - anything where she can make a mess.   Like most children she enjoys singing and stories, cuddling and Cbeebies! April has two brothers, George and Eli, who she smothers with affection - whether they like it or not!   April loves getting together with her cousins and wider family and being thoroughly spoiled by everyone.

April is a three years old girl who has, but is not defined by, mps1 (Hurlers Syndrome). This is a genetic condition which affects 1/100,000 people.

Hurlers patients have a missing enzyme which otherwise would breakdown the sugars in their bodies. The sugars build up in all parts of the body and cause deterioration, April suffers from a myriad of problems throughout her body including her sight, hearing, spine, joints, muscles, heart  etc.  Luckily the progression of the disease has been halted, though not cured, by a bone marrow transplant, which April had at eight months old. This is effective in replacing the enzyme but does not solve any musculoskeletal issues and cannot repair damage already caused.

April receives fantastic treatment at Manchester Children's Hospital, who are specialist in April's condition and has developmental input from the team in Wrexham Maelor, including play, speech and physio therapy. She is supported by the MPS society who fundraise for research, provide information and do advocacy work for families as well as organising conferences and events to bring affected families together. 

If you would like to know more about Hurlers Syndrome you can visit MPS Society UK.  If you would like to learn more about The Rare Project or to take part please click here.

Find out about some of the other children taking part in the Rare Project by clicking here.

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