St Albans woman defies odds to become oldest with Rett Syndrome

Jennifer Stone is believed to be the oldest person in the UK living with Rett Syndrome.

Jennifer Stone is believed to be the oldest person in the UK living with Rett Syndrome. - Credit: Milehouse Lane

Against all the odds, a St Albans woman has become the oldest person in the country living with a rare genetic condition.

Jennifer Stone, 73, was diagnosed with Retts Syndrome in early childhood and has lived with the condition with consistent, daily support.

Rett Syndrome is a complex neurological disorder which leaves people profoundly and multiply disabled with high support needs throughout their life.

Currently there is no known cure for Rett Syndrome, and it can some cases reduce life expectancy. Due to improvements in treatments and medical care people with the condition are now living well beyond previous expectations.

Jennifer Stone is believed to be the oldest person in the UK living with Rett Syndrome.

Jennifer Stone is believed to be the oldest person in the UK living with Rett Syndrome. - Credit: Milehouse Lane

Jennifer lives at Milehouse Lane, a specialist Hertfordshire residential care home, and has done for 26 years. As a result of her condition, she has frequent spasms and muscle seizures, which has affected her mobility, especially into later life. Jennifer is also unable to communicate verbally but does understand through gestures.

In 1996, Jennifer began being supported by leading health and social care provider Voyage Care, which has focused on keeping her fit through regular exercise as those with Rett Syndrome are more prone to chest infections. This was supplemented by her support team, 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.

Most Read

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.

Senior support worker Gemma Ireland said: “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!

“Although non-verbal, she’s 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.”

According to the team at Milehouse Lane, the secret to Jennifer’s long-life is to always take the opportunity to be present, to remain playful and to love what she does, whether that’s listening to music, connecting with nature, socialising with staff and individuals or playing pranks.

Julie Benson from Rett UK added “I can confirm that 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.”