Charity of the Month: Childhood Cancer Awareness - CCLG

September was a difficult month for us to choose just one charity to highlight so instead we will be featuring a different charity each week.

Why was it so difficult? Well, simply because this month features two words that should never be associated together, Childhood Cancer Awareness.

Going Gold for September is well known to those who have been or know of someone affected by childhood cancer. Whether rare or not, the effects can be life-changing and sadly, in some cases, sadly, life-ending.

The aim for this month is for us to raise awareness by not only sharing some of the scary statistics that surround this horrible disease but also the stories behind some of our local charities that help not only with grants and information but also listen because they know firsthand what parents are going through.

Although childhood cancers are deemed rare, there are still around 1,900 new cases of cancer in children in the UK every year spread across 76 different types of cancer. The most common types are leukaemia’s (3 in 10), brain, spinal, and other intercranial and nervous system tumours (2 in 10), and lymphomas (1 in 10). They are not as rare as you think when you know someone who is or has been affected.

Not all children die from these cancers, some go on to make full recoveries, but they have undergone the most grueling course of treatment and or surgeries to get there.

Leathes Prior is proud to have supported all of this month's charities over the years and it all started with the last story and our final charity for September.

Our final charity for September is Children’s Cancer & Leukaemia Group (CCLG) & the #bemoremaisie fund.

Children’s Cancer and Leukaemia Group is a leading children’s cancer charity and the UK and Ireland’s professional association for those involved in the treatment and care of children with cancer.

My name is Dawn and I joined Leathes Prior in 2007, a little after our beautiful daughter Maisie turned 2. She used to come into the office to meet me from work, with her cheeky little smile, even when she was caught sliding down the banister in reception! In October 2015 we noticed some symptoms that we could not explain which led to us taking Maisie for a private consultation because something was not right. In January 2016, following MRI scans and tests, Maisie, then aged 10, was very unexpectedly diagnosed with a pilocytic astrocytoma in her brain stem. Our world fell apart. We suddenly became one of those families needing help and support from charities like the ones featured this month. After her initial surgery, Maisie was left quadriplegic (no movement in all four limbs) she was unable to breathe unaided and relied on a ventilator to do this for her and she was unable to eat or drink anything.

Little did we know the journey that this would take us on, a new house, countless surgeries, 24-hour care, intensive radiotherapy, 18 months of weekly chemotherapy, daily physiotherapy, our own fundraising, and the list goes on. The one thing we discovered was that the charities that were there to help families like ours, did just that. Whether it was with emotional support and guidance or to help us buy essential equipment, be able to have a holiday, or even just a day out, which when you are receiving vital treatments can be very difficult.

Following the chemotherapy treatment which finished in 2019, everything seemed to be going well. Maisie studied at home, achieved a GCSE in maths, and had started studying towards A level. She was making some phenomenal improvements with her body movements and was waiting for a rehabilitation placement date. Maybe we should have known that this was too good to be true. After almost 2 years of protecting her against covid, in August 2022, Maisie developed a chest infection, similar to those she had experienced before but sadly this one uncovered the fact that her tumour was active again. After a short time in the ICU at the NNUH, Maisie very sadly passed away on 15th August 2022 aged 17.

Maisie was very well known on social media and had received support from across the world, however, we didn’t want to set up a charity in her memory, it takes a lot of time, and commitment and can become a full-time job. We then stumbled across the Children’s Cancer & Leukaemia Group, the CCLG has an option available to set up a Special Named Fund which you can continue to fundraise for whichever type of cancer you wish to support, so using the phrase that we had adopted following her passing, and to mark her first anniversary, the #bemoremaise fundraising page was launched which is now raising money for research into paediatric brain tumours.

Maisie's special named fund

It is heartbreaking being in a world where you are given the worst diagnosis for your child. I was very privileged to have met both Amber and Jesse and as parents, we have all been there for each other during the worst times of our lives.

Awareness is so vitally important not just with symptoms to look out for but to know that you are not alone and that there is always someone there to help and guide you in the right direction. These charities and others like them are invaluable but we need to let people know that they are out there, please join us in supporting our charities and raising awareness of what they do, and who they are there to support.