Hi my name is Daniel, my daughter Camilla has recently been diagnosed with a rare genetic disorder called MLD. Due to a late diagnosis from NHS geneticist n delays in referrals and appointments it took 18 months for her to receive a diagnosis. As a result she is no longer eligible or entitled to the stem cell treatment and medication that she needed to arrest her condition and slow down the progression of the disease, as the disease has progressed so far that any treatment or medication that could have, not only slow the progression of the disease but prolonged her life, would now be deemed to cause her more harm than good and her expected life span now is likely to be 2 years at best. Over that time her mobility, coordination and speech are going to decline to the extent that eventually she will need specialist medical equipment and around the clock care to make what little time she has left more comfortable for her and her mum who is her primary carer at present. It is with a very heavy heart that I ask for your help, to help me, to help my little girl, to be as comfortable & as happy as she can be and to create some special memories for what little time we have left with her.
I will be taking part in a white collar boxing event called beginners to winners, held at Cheltenham town hall on the 16th of September I will be posting a link to this on there Facebook page to help me raise money for Millie and raise awareness for her rare condition. Any donation how ever big or small is very much appreciated.

Thank you