As many of you know, my lovely 4 year-old niece, Isla, has just been diagnosed with MPS III (Sanfilippo Syndrome). It's a rare genetic disease which means her body doesn't produce the enzyme needed to remove certain waste products. These will slowly build up in her body, changing the way she functions and behaves and eventually cutting her life
The MPS Society helps children and families by providing individual advocacy support, education, information-sharing and also helps to fund vital research. There is currently no cure for MPS and only palliative treatments to ease its effects BUT progress in enzyme replacement and gene therapy gives hope for families just like ours in the future. The MPS Society is making a difference to my family right now and Isla already has a specialist advocacy support worker assigned.
If all the people who love Isla, Nic, Darren and Toby could donate just a couple of quid to the MPS society today then that would mean a lot to us. Your loving words, thoughts, prayers, condolences and hugs are greatly appreciated and needed; but I also need to do something real and tangible to try to 'Make Everything Ok' for my niece. I hate asking for money (especially on Facebook) but please please donate
For my first fundraising event I am going to run the Marsden to Edale fell race The Trigger is a 24 mile fell race with 4,500 feet of ascent. It starts in Marsden, entrants have to navigate their way over Black Hill, Bleaklow and Kinder Scout, visiting seven check points on route and finally finishing in Edale and the after a short brake I am go in to make my way back to Marsden hopefully within the day (fingers crossed)