A mother of a six-year-old daughter is raising awareness of an illness usually associated with elderly people after her child developed a rare form of dementia.
Little Penny Mills has severe memory loss, she cannot remember words already learnt, how to walk and the ability to swallow after being diagnosed with Sanfilippo at the age of four.
Her mum Kelly Mills, 42, told Birmingham Live: “The doctor told me about how the disease damages cells, but he didn’t tell me that it was terminal.
"He gave me a leaflet but didn’t know much about the condition and said the information might be out of date.
"Once I’d dropped Penny at school, I read the leaflet and saw that it talked about palliative care. I drove to my mum’s and called the MPS Society which was referenced at the bottom, and they filled me in and have held my hand ever since.
“I’d taken Penny for a genetic test thinking that if they discovered what was wrong with her, it could be treated. It hadn’t occurred to me we might be told she may not live beyond her teens.”
Penny now has difficulties with her hearing and speech, numerous nasal infections, a learning delay and diarrhoea.
Kelly added: “I’m very keen to raise awareness of Sanfilippo and other MPS diseases – if doctors don’t know about them, diagnosis is delayed and children don’t get help as early as possible.
“Secondly, some clinical trials are happening around the world into MPS but they are largely funded by charities. We need more people to know about MPS for it to attract more research funding to help us find a cure for this terrible disease.”
When COVID-19 restrictions are lifted Kelly and her husband Andrew, 46, are planning to take Penny to Disneyland. Their family and friends have raised £10,000 so the parents can buy their daughter a new all-terrain wheelchair for the holiday and so they can take her out on excursions.
Dementia Action Week 2021 runs from 17 to 23 May. For more information visit the Alzheimers.org website.
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