Carys’ Wish

Hi, me and my 3 amazing children will be running the Jane Tomlinson charity run on August the 4th and raising money for Carys and her family to enjoy Carys wish ❤️

i will be running the 10k run

Spencer age 11 will be running the 2.5k run.

Saxon age 6 and Ruby-Raine age 4 will be running the 1.5k run.

please read Carys story below written by her mum ❤️

Any donations will be greatly received

Thank you Gemma ❤️

Carys was diagnosed with a rare form of cancer in October 2023 called Diffuse Large B Cell Lymphoma with Aberrant T Cell Expression. Since then she has been on intense High Dose chemotherapy. Her treatment has been brutal, more than I could ever explain. It has made her severely poorly at times and we’ve had lots of really upsetting discussions with her team over what comes next. She’s had multiple visits to Intensive Care, she has spent more time in hospital than at home and has had her life saved numerous times by her hospital team. Without them intervening - she simply wouldn’t be here.

This was Carys’ second cancer diagnosis. She was also diagnosed with T Cell Lymphoblastic Lymphoma in 2017, aged 5, which she completed almost 3 years Chemotherapy for.

Carys has now spent more of her life living in the cancer world than she has living a normal childhood life.

Since Carys has had 2 cancers by the age 11 our team suspected she may have something genetic, predisposing her body to cancers. We have waited around 6 months for genetic results to come back and just over a week ago we were told that yes, Carys does in fact have a genetic issue that puts her more at risk of developing cancers.

Carys has now been diagnosed with CMMRD (Constitutional Mismatch Repair Deficiency)

This is an ultra rare syndrome/disease, that only affects 1 in one million people in the world. It’s so rare that our oncology team are having to get advice from another team in Canada who are currently doing research to learn more about CMMRD.

CMMRD puts Carys hugely at risk of developing more cancers. The most common ones being brain tumours, leukaemia’s, lymphoma’s & bowel cancers. Given her age & history we have been told it’s not if she will get more cancers, it’s more like when will she get more cancers. There is no treatment available for CMMRD, it’s a case of trying to treat the cancers as they come - which of course, may not always be possible.

Children with CMMRD typically do not live to adulthood.

We are very hopeful that Carys will as always, take her own path and not follow the typical rules. If anyone can defy the odds against her and live a long & happy life with this disease - it’s Carys.

Carys will undergo intense surveillance for the rest of her life including brain MRI’s, full body MRI’s, ultrasounds, colonoscopies, endoscopies, blood tests, urine tests, reviews from multiple teams at the hospital and more.

Carys has missed out on her entire last year of primary school. Not to mention her missing most of her first year of school due to her first cancer. She has missed out on birthday parties, school trips, holidays, Christmas, all the normal things that children love to do that we take for granted.

Many of you will be aware that from the day I shared the news about Carys having cancer again, I have been adamant that people do not raise money for her/us because there was a chance she may have to travel abroad for treatment which we would have to self fund. We now know that isn’t the case. And given the news we’ve received with the diagnosis of CMMRD we know we could possibly have limited time to be able to do things that make her happy. She could go years cancer free, she could have a new, untreatable cancer within weeks. We have been told to do things that make her happy & let her live her life to the fullest.

Now is the time we are finally asking for your help. A month before Carys was diagnosed last year we had the most amazing holiday in Turkey and all she wants is to go back to the same place and do it all over again. (Part of me wonders if she wants to go back there to remind herself of life before cancer treatment started again - and who can blame her)

With the price of the holiday, Carys’ health insurance, other costs & possible limited time we would be grateful for any help to make it happen for her.

Carys is due to have a surgery in the coming months that will take a lot of recovery so we know she won’t be able to travel for a while after that, add that to her high risk of getting more cancers and having to go back on treatment. We don’t have much of a gap where we know for sure that she’ll be able to go on holiday. So it feels very time critical.

Any donations/fundraising to making Carys’ wish come true would be hugely appreciated. All those offers of raising funds for her that I turned down - go for it. If you can and want to then please help my (truly) one in a million girl get her wish and have the holiday she so much deserves while she’s free to do so.

With all of my heart, thankyou!

Our hearts are hurting, our lives feel more upside down than ever. We are living in the moment and taking it one day at a time.

If for any reason we are unable to use the funds to take Carys on holiday, it will be used doing other things to make her happy and spend time as a family.

Lots of love,

Sara x