A few words from my daughter, Rhian:

My daughter Lilly-May is two years old and was born with Leukodystrophy. The Leukodystrophies make up a group of rare genetic disorders that affect the central nervous system which is responsible for nearly everything we do from our heartbeat, to walking.
Lilly-May was also diagnosed with Silent Aspiration when she was nine months old. The condition means that foods and liquids are swallowed poorly, and can go into the lungs by mistake. Usually when this happens, most people will turn red and start to cough, as an attempt to get it out of the lungs. However, as people get weak and swallowing worsens, this aspiration can happen silently, which means there will be no signs showing that this has occurred.
My little girl has to have a special wheelchair to support her head, as she has no head control. The chair also helps with positioning and gets her body used to being in the standing position. Although the chair accommodates her growth in length, she will need a new chair as she gains weight. She also needs special seats for when she is in the bath, and also a special feeding chair which supports her head so she does not get sick when eating.
As Lilly struggles to maintain weight, she is fed continuously through special tubes, which need to be changed twice throughout the night. The only other person who is trained in feeding and helping to care for Lilly-May is my mum, Ann, who lives in Porthcawl.
The dream is to be able to move closer to my mother to ensure that Lilly-May receives the best level of care. Building modifications to add disabled access and facilities would go a long way to improving my little girls quality of life. Finally, I would like to build a sensory room to provide Lilly-May with additional stimulus as her condition means she struggles to play and interact in the same way as other children.
Any help or support will be greatly appreciated.