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saturdays guests part 4
Published : 27 Aug 2012 14:11:27
Blake and his family
There is no cure for MeCP2 Duplication Syndrome, although trials are being carried out in America which need to be funded. Here in the UK, there are not many sufferers, and only 5 diagnosed with it in Scotland. The condition has just in the last few weeks, joined forces with Rett Syndrome, which mainly affects girls, and which is also related to the MeCP2 gene, so finally MeCP2 Duplication Syndrome are under a charity, although not themselves a stand-alone charity. We hope to raise awareness into this condition, and ultimately get more researchers interested and involved into looking in to treatments or cures. We are aware that a cure in our son’s lifetime is unlikely, but we also think it’s so important that we think of future parents going through this in years to come, and maybe their story will have a happier ending.We have set up a Trust Fund, called The Blake McMillan Trust. We are going to use this for any of Blake’s needs. We have already had it made clear to us that Blake may not receive everything he needs from the NHS, and we want to give him the best of everything, from equipment, therapies and carers to treatments. We also believe strongly in helping others with MeCP2 Duplication Syndrome, so will have decided to donate a percentage of everything that comes to Blake, to the UK group for the condition. As I said before, research is so important, and we want to help improve the lives of people with this awful condition.We would just like to add that we have been so grateful for the immense support we have been given. Everyone at Ninewells has been faultless. Nothing has been too much trouble, and in fact, our consultant paediatrician even made a house call to check on us! Blake has a physiotherapist, a speech and language therapist, a dietician, and a case manager (bit like a PA!!). Our family and friends have rallied round, even strangers have offered help and support. We have had plenty of shoulders to cry on, and plenty of good listeners to call upon. Whilst our situation is unbelievably sad, and helpless, we have encountered so much love, and we are blown away by human kindness.No amount of money will take this away from our boy, but it may help make his life as comfortable and happy as possible, and we will strive to give him everything he deserves, love being at the top of the list."
Blake is the match mascot on Saturday so please give him a warm welcome to the pitch. Also thanks to the generosity of two Dundee fans who wished to remain anonymous, Blake is also Saturday's match sponsor.
For more information about Blake and upcoming fundraising events please take a moment to check out the links below and like “Blake's page” on Facebook. Baby Sensory BashBlake's Mountain Goats The Angus Kiltwalk Also, Blake’s Birthday Bash….Dinner Dance 23rd March, Apex Hotel Dundee (which sold out in 12 hours!)