An adapted home for Asa...

Hello, my name is Pia and I am raising funds for my wonderful 13 year old son, Asa. He has recently been diagnosed with a disease called Leukodystrophy which is a rare genetic disorder which breaks down white matter in the brain. It is affecting the way Asa's brain functions and is causing a rapid decline in his cognitive and motor skills. It is a terminal diagnosis and he is unlikely to live until adulthood.

From the moment he spoke at 4 years old, Asa was offending and charming everyone in equal measure. He is a born anarchist and entertainer and from the get-go he enjoyed making loud and accurate observations about absolutely everything! He is artistic and expressive, and no one has made more people cry with laughter than Asa. He is the best of us and is deeply loved by his two brothers, Jacob and Jude, his dad and I, as well as everyone else along the way!

Asa has been living with severe autism his whole life and we realise now that this has been masking the symptoms of this dreadful disease. We would be eternally grateful to raise as much money as we can to adapt our house to accommodate Asa's deteriorating health. This includes an adapted bathroom with a non-slip floor, walk-in bath, and a special toilet that offers assisted cleaning.

We just want to make the most of the time Asa has left with all of us and making these physical changes to the house would make this so much easier for us all. As September is Leukodystrophy awareness month I am hoping this will raise the profile of this awful disease as well as raising funds for my amazing son.

Thank you so much for your time,

Pia, James, Jacob, Asa, and Jude