"We have always just been really grateful for the kindness that Sue Ryder showed my grandma and our whole family"

A woman has pledged to run the TCS London Marathon 2022 in memory of her beloved grandmother who was cared for at Sue Ryder Neurological Care Centre Stagenhoe.

The Hitchin-based centre provides specialist care for people with a range of neurological conditions such as Huntington's Disease, Parkinson's and Multiple Sclerosis. The expert team includes Sue Ryder Nurses, physiotherapists, and healthcare assistants who all work together to support people to live their lives as fully as possible.  

Aileen Brennan's grandma, Ellen, had Huntington's Disease and was cared for at Stagenhoe for the last 10 years of her life. Now Aileen, 29, is raising funds for Sue Ryder by running the TCS London Marathon in her grandma's memory.

"The Sue Ryder centre expertly cared for my grandma, understanding the complexities of Huntington's Disease. Most importantly, it was a place my family loved to visit, feeling welcome by staff and making special memories. I remember the Sue Ryder staff always being so friendly. I was really small when my grandma first went into Stagenhoe and she died when I was 11 but visiting Grandma was a big part of my childhood. Everything was done to make things for me as normal and as fun as possible. We would go to visit at Christmas and be given chocolates and we would run around the grounds having a great time. And when one of my uncles from Australia visited for my grandad's funeral Sue Ryder provided a carer so my grandma could attend."

Having taken up running in lockdown, Aileen ran the Hackney Half Marathon last year to raise awareness of Huntingdon's Disease, an inherited degenerative illness that affects the body's nervous system. Now she is determined to go the full distance in 2022.

"We have a huge extended family who are affected by this. Part of the reason that I wanted to continue this year was because so many of my relatives got in touch after I ran the half-marathon to say how happy they were that I was doing it and raising awareness."

Although Aileen's father has tested negative for the Huntingdon's gene, two of his six siblings did have the gene and one has since died.

"When my grandma was diagnosed it did come a bit out of the blue – I think for her generation there was a lot of stigma associated with Huntington's so it wasn't spoken about. My grandma was lucky in a sense that her Huntington's didn't affect her as badly until she was a bit older. But with Huntington's it's not about percentages, it is quite clear cut that if you have that gene it will develop at some point. I'm aware how lucky I am that I don't have to make any decisions about testing and children when many members of my family are going to have to make those choices."

Aileen, who lives in Hackney, is looking forward to running around her home town having been part of the marathon crowds as a child.

"The marathon is such a big challenge and it's really something to be able to say you've done it. I grew up in London and would sometimes go down to watch it with my mum. It's great that people will be able to come along and support again this year after all the restrictions. I've told my family they have to come and I'm hoping to get quite a few of my friends to come along too. 

"Tower Bridge is such an iconic section and I grew up in Pimlico so for me the entire stretch along the Embankment and coming up to The Mall will be really special."

Aileen has been following a 16 week training plan in preparation for the event on October 2nd and getting up early to fit long training runs in.

"On good days it feels really great and I really enjoy it but on less good days I wonder why I'm doing it! I don't want to put any pressure on myself to hit a particular time. I'll just see how I feel on the day - although I think it might depend on the weather!

 "It's just really important that the awareness of this disease is there and that the care and expertise is still there so that's why I'm fundraising. We have always just been really grateful for the kindness that Sue Ryder showed my grandma and our whole family. We felt that she was in the right place and the expertise was there to look after her. Just because someone has a degenerative disease it doesn't stop them being able to enjoy things in life and make memories. And moving forward I'm sure that, because of my family history, we will come to rely on Sue Ryder again in the future."

Sally Davies, Regional Neurological Director, said:

"We have been supporting people like Aileen's grandma here in Hertfordshire for many years, providing expert care for those with complex neurological conditions such as Huntington's Disease, as well as specialist neurological rehabilitation.

"Making sure that the families and friends of our residents feel supported and cared for is something that is very important to us, so it is heartening to hear that Aileen has such warm memories of her grandma's time at Stagenhoe. 

"We are all so inspired by Aileen's pledge to take on the challenge of running the TCS London Marathon 2022 to raise money Sue Ryder. The money received will go towards supporting the vital work that the charity does, supporting people through the most difficult times of their lives. I really hope that her story will inspire anyone out there in a position to donate to get in touch."