A Batten’s Disease Flair Up Took Their Christmas Spirit. Their Small Town Gave It Back.

As originally reported in the BBC; In Leyland, Lancashire, Mother Melanie Moffatt describes feeling miserable on Christmas. She was spending it alone with her 10 year old daughter Matilda who has Batten Disease. She was having a very rough weekend with her chronic health problems, so the two stayed home without celebration.

Batten Disease

Batten disease is rare genetic disorder that affects the nervous system. The disease causes a buildup of fats and proteins known as ‘lipopigments’, which then kills neurones in the brain, eyes, and central nervous system. The disease is debilitating; Matilda has lost of sight and ability to speak. Other common symptoms include seizures, personality changes, loss of all motor skills, and dementia. The disease is sadly fatal.

Christmas With a Rare Disease Episode

Melanie explained, “We were all on our own that day. Both of us with no family around, no friends around.” Instead of joy and extravagance, the holiday was spent lonely in the house. For families with rare disease patients, this may not be unfamiliar story. Often families end up stuck at home because of the big efforts that may come with events or travel: keeping a sleep schedule, getting proper food, having all the equipment and medicines and tools that the patient may require. A ‘bad week’ can happen anytime, and often does.
Melanie missed the festive spirit though. She wanted to turn around this low into something positive. So she went to social media- where she says she wrote an advertisement on the Leyland Hub, her British town’s communal facebook page, ask “please can you reinvent Christmas.” And they did.
People showed up to spread fake snow across their yard,. Rose Warren, who came with the camper van dressed in elf ears with big present bags, explained she was touched when she saw the story, she felt shocked and overwhelmed. She wanted to cry and wanted to help. So she made her vintage VW camper, usually used for weddings, into Santa’s sleigh and dressed in costume as Santa and an elf to take Matilda out for a ride. The town came and spread some love, and helped Melanie and Matilda take back Christmas from their rare disease holiday blues.

What are your thoughts on rare diseases and holidays? Share your stories, thoughts, and hopes with the Patient Worthy community!

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