We are raising money for a work collegue of mine called Shelly and her family who have a 10 year old daughter called Maddison, please read their story below......
Maddison has an genetic condition called Sanfilippo Syndrome MPSIIIC. Sanfilippo Syndrome is a extremely rare condition which is only present in 1 in 70,000 births and the MPSIIIC strain is only found in 4% of the cases worldwide.
Unfortunately this disease is terminal and will eventually cause Maddison to loose her ability to walk, talk, see and hear. Many children with this condition don't see the end of their teenage years.
As it stands medically there is no cure for this disease and we can only manage her symptoms as and when they occur. The time will come when her vision will deteriorate, she will become hard of hearing, she will stop understanding age appropriate games and she will become immobile. Her life will change completely and so will ours.
We cannot change this but we can make life as good as possible for her. With these kind donations we will be able to manage her symptoms in a way that maintains a good quality of life for her whilst keeping her smile shining.
Please support Joe and I to reach our goal of raising £1000 for Miracle4Maddi so we can make the 26.2 miles be completed for someone special.
Thank you for reading.
If you want to follow Maddi’s journey then you can like the page below: https://www.facebook.com/pages/Miracle-4-Maddi/701640396636310
For further information about Maddison's condition please visit the MPS society's website:
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- Dr Riccardo Frati
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