Rett syndrome is a rare genetic neurological condition that can lead to severe mental and physical disabilities. It affects 1 in 12,000 females and is even rarer in men. There is no cure for Rett syndrome and those with the condition often have a lower life expectancy according to Rett UK.
However, Jennifer, a person we support one of our residential care homes in Hertfordshire seems to have defied the odds! After her diagnosis in early childhood, Jennifer has received daily support for her condition and she moved into Milehouse Lane around 26 years ago. Jennifer is now 73, making her the oldest person in the UK living with the rare genetic condition.
Jennifer joined the service in 1996, and over the years, our team has supported Jennifer to keep her lungs fit and healthy through regular exercise as those with Rett syndrome are more prone to chest infections. This was supplemented by her support worker, who had physiotherapist training in order to learn massage techniques that would help keep Jennifer’s lungs healthy. Through consistent exercise and person-centred care, Jennifer hasn’t had a chest infection in over five years and has no need for medication!
While care and support has played a major role in keeping Jennifer healthy, her fighting spirit is also recognised as a key factor. According to her support team, Jennifer doesn’t let Rett Syndrome get in the way of her living a happy and fun life. We spoke to Gemma, Senior Support Worker, at Milehouse Lane who told us “I’ve known Jennifer for over 10 and half years! She is very mischievous, loves to have a laugh and takes part in anything. She has a sweet spot for cooking and will try anything she puts her mind to!
As a result of her condition, Jennifer has frequent spasms and muscle seizures, which has affected her mobility, especially into later life. She is unable to communicate verbally but does understand through gestures.
Gemma also shared that “Although non-verbal, Jennifer is still an outgoing person who loves to interact with anyone who comes her way. Every week she’s goes to groom the local horses, connect with the outdoors and keep as active as possible.”
So, what’s the secret to Jennifer’s long-life while living with Rett Syndrome? According to the team at Milehouse Lane, the secret is to always take the opportunity to be present, to remain playful and to love what you do. Whether that’s listening to music, connecting with nature, socialising with staff and individuals or playing pranks on people which she is well-known for!
Julie Benson, from Rett UK said, “I can confirm your lady, Jennifer Stone is the oldest lady with Rett syndrome in the UK known to us and it’s lovely to hear she is doing so well.”
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