LFS Never Give Up

LFS Never Give Up Raising awareness of Li Fraumeni syndrome

This is Our Ella.Born in April 2004, Ella was our second Daughter.At 6 weeks old she became unwell with a high temperatu...
05/10/2024

This is Our Ella.
Born in April 2004, Ella was our second Daughter.
At 6 weeks old she became unwell with a high temperature and vomiting, we were sent to A & E, Ella was admitted to the ward to be monitored.
A nurse on the ward noticed that Ella’s eyes were ‘bobbing’ this along with the high temperature and vomiting were all signs of pressure in her head.
Ella was sent for an urgent CT scan, the next morning we were told she had a brain tumour.
The only way she was going to survive was to have surgery to remove the tumour.
The surgery was 8 hours long and did not go well, her heart stopped beating for 25 minutes, when they got her back the surgeons took the decision to stop the operation and allow us to say goodbye, they predicted she would not survive the next 24 hours.
Ella continued to fight, a week later they attempted the surgery again and succeeded.
We knew Ella’s future was uncertain, we had regular scans and checkups, she was developing but slowly and definitely had weakness in her limbs but she was a happy child.
A year after the first surgery, a scan showed the tumour was growing again, Ella was referred to oncology and she started a course of chemotherapy, tests after showed the tumour had not shrunk.
We were told Ella had 4-6 months.
We carried on with life as best we could taking each day at a time. Each scan showed the tumour being the same size as it was before but for some reason it had stopped growing, we were told that she would not live to see her 5th Birthday.
Ella’s health wasn’t great, she had epilepsy, cerebral palsy affecting all 4 limbs, she was tube fed and susceptible to chest infections, we spent a lot of time in hospital or at Helen House hospice, despite this she was a happy child with a beautiful smile and giggle that would make anyone laugh along with her.
In April 2009 Ella turned 5, we threw a big party and invited everyone who was close to her.
In June 2009, Ella became unwell, we knew it was different, scans showed the tumour was growing again.
On 11th June 2009, Ella peacefully passed away at Helen House hospice.
We didn’t know at the time that Ella and our other 3 children were carriers of the Li-Fraumeni Syndrome.
Always in our Thoughts
Forever in our Hearts 💕

16/09/2024

Hi guys!
Just a heads up we are working behind the scenes on a new website containing loads of exciting info and merchandise to raise awareness for the cancer gene LFS so keep following the page for updates and when the website is ready for launch we will let you all know thank you again for your continued support
Kev 💙

LFS UK 2024 💙Yesterday, me, Libby and our mum, attended LFS UK 2024 ran by The George Pantziarka trust. It is an amazing...
16/09/2024

LFS UK 2024 💙
Yesterday, me, Libby and our mum, attended LFS UK 2024 ran by The George Pantziarka trust. It is an amazing event put on for families like ours as well as healthcare professionals interested in our condition. We listened to many interesting presentations from doctors and scientists who specialise in our gene, who are working hard researching our condition and running clinical trials to support people like us. It was also great to meet other individuals and families living with LFS us just like us and hear their stories and experiences.
The biggest thing we took away from the event yesterday was how lucky we are to live in Oxfordshire, as we are monitored and scanned at hospitals in Oxford and receive all the relevant checks for our condition. However, lots of people living with LFS, from all over the UK, aren’t as fortunate as we are and are not receiving these important checks that we need to detect early signs of cancer, due to lack of funding in their areas. So as a family we feel extremely grateful for our hospitals in Oxford and the work they do to support us.
Thank you to The George Pantziarka trust for putting this event on, we’re looking forward to come back next year!
Abbi 💙

📖 The story behind our name 📖This is Kev, our dad, and he’s just coming out the other side of his cancer journey. Cancer...
16/09/2024

📖 The story behind our name 📖
This is Kev, our dad, and he’s just coming out the other side of his cancer journey. Cancer affects someone in the UK every 2 minutes and unfortunately our dad is one of those people. This has all been down to a rare genetic disorder called Li Fraumeni syndrome that increases the risk of him getting cancer, this also means he has to have lots of monitoring, hospital checks and appointments all year round. We, as his children, have all inherited the disorder and are all going through our own journeys of checks, tests and precautions.
Dad was diagnosed with prostate cancer in September of 2022 after some routine checks, he underwent surgery to remove the majority of his prostate and faced a long recovery.
Unfortunately, in March of 2023 the cancer returned in a mole on his leg and he faced yet more procedures to remove the cancer, which left him in a boot for 6 weeks.
Just when we thought dad was over the worst of it, the cancer returned in the prostate area in December of 2023 this meant he had to go through 3 sets of treatment, which consisted of 2 sets of hormone therapy and 7 weeks of radiotherapy.
Thankfully, he is now recovering and recent tests have been positive.
Throughout our dads journey his motto has always been ‘Never give up’ which is why we have chosen this to be the name of our page, as our whole family have believed in this saying throughout dads journey to get us through this really tough time.
The purpose of this page is to raise awareness of our condition, as it is very rarely heard of and talked about. As well as raising money for people with our condition that may be in need or to donate to chosen charities that support people like us.
Please add our page, share with your friends, and make sure to look out for updates. We have lots of plans and ideas to come, including a website that we’re in the process of setting up. We would be thankful for your support along the way!
Abbi, Libby & Harry 💙

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