"MEGAN'S FLUTTERBY FUND": HYDRANENCEPHALY AWARENESS MONTH OF JUNE

MEGAN'S FLUTTERBY FUND

WELCOME " MEGAN'S FLUTTERBY FUND" SITE has been set up in memory of Megan Bell who died aged 13 years of a life limiting condition. Megan was profoundly disabled and during her lifetime we had to fund raise to obtain lots of specialized equipment and other things such as switches to activate toys and computer. The purchase of musical instruments ,which the children find so exciting and stimulating. Bean bags, mats, lights, mirrors the list is endless. A lot of this equipment to enrich her life was not supplied by the Health Service as they do not fund for lots of these things. We too had help from our local community, friends and wonderful people who helped us do this .

We now have set out to help other families with children like Megan in her memory to have these things through her Fund. Our aim is to raise funds to help special needs and life limited condition children in our local community to be able to have as many of these things that we are able to help towards or purchase for.

Being specialized equipment can cost from as little as £30 for a switch to hundreds of pounds depending on the child's ability, but can make such a difference to the child's everyday quality of life and the joy and achievement it can bring by being independent for those short moments . Fibre Optic lights and musical instruments such as an ocean drum again bring such enjoyment but cost around a £1000 for lights and £80+ for the drum.

We hope you like our Blog and please feel free to post your comments and Thank you for taking the time to look .

Gisela Bell & Anna Bell Now Lyman

CHARITY TAX REGISTERED.

06/06/2014

HYDRANENCEPHALY AWARENESS MONTH OF JUNE

This month is HYDRANENCEPHLY awareness. Something obviously close to our hearts as Megan had this life limiting condition. Parts of the brain are absent and in Megan's case this was almost all of it but despite the prognosis that if she even survived birth and the first few days or weeks she lived to be 13 years old. Eighteen years ago we came up against no one knowing anything much about the condition at all and found ourselves drowning in the unknown. By chance and help of... technology we found a group called " Rays of Sunshine" a group formed by Barb Aleman in Canada who had first hand, having a daughter with the condition and started the group to help other families. The group was invaluable to us with so much help and information, always someone who had been there and got the tee shirt with symptoms we and the doctors floundered with. We still have many many friends that we have become very close to despite all the miles between us and some in UK too. This month is Hydranencephaly awareness and we join in their highlighting of the condition and the realisation that when the doctors say there is no hope for a child with this condition do not give up your fight.

Love and Hugs xxxxxxxxx