Our daughter Karis passed away in September 2018 of a brain tumour, she was only 10. Karis had many other medical conditions and was poorly from a baby, spending her first 7 months of life in hospital. Then, at the age of 2, we found out Karis had an Aggressive Malignant Brain Tumour called a SPNET (Supratentorial Primitive Neuro Ectodermal Tumour) but in 2017 we were told that her tumour was in f
act called a ETMR (Embryonal Tumour with Multi-layered Rosettes), which was also aggressive and malignant. Karis had the tumour removed quickly and endured high doses of chemotherapy, twice daily radiotherapy (for 6 weeks) followed by maintenance chemotherapy for a year. Times were so hard and thankfully Karis’ tumour didn't come back for 5 years, but the treatment caused so many other medical, emotional and social problems throughout that time. As a family we just got on with it, we felt so lucky that after each scan we were told there was no evidence of recurrence and we had our precious Karis by our side. It was like living on a time bomb, but we tried to be positive and take one day at a time. Then, in 2018, our lives were shattered again as we found out Karis had another Aggressive Malignant Brain Tumour and after having a biopsy we was told the devastating news that this tumour (Glioblastoma Multiforme) was untreatable and unremovable, as it was growing like a te****le through her brain and not like her first tumour, which was round and was easier to be removed. Great Ormond Street told us that they couldn’t do anymore for our beautiful Karis, apart from a chemotherapy drug that may slow the growth of the tumour down slightly. As you can imagine this was absolutely the worst news any parent could hear, and we just couldn’t comprehend life without our beautiful princess. Karis was a poorly child throughout her ten years but loved life and wanted to just be with her family and friends. She was a beautiful girl inside and out and even though how poorly she was she worried about others and always wanted to help, even when she was so poorly herself. She had a fantastic cheeky sense of humour. Karis saw herself as lucky because she could do certain things that others couldn’t do. She was such a brave little girl that touched the lives of so many people, and we miss our beautiful darling Karis every second of the day. Karis is our inspiration in life, our hero and will always be. We always appreciated all the charities who helped us throughout our journey, and we feel as a charity ourself, we can now offer some relief to other families finding themselves in the same situation as we once were. We want to try to make life that bit easier and give what we can as a charity to as many families as we can. The objects of our charity are to preserve the health and relieve the needs of children, up to and including the age of 16, diagnosed with Brain Tumors, and their immediate families throughout the South-East of England in particular, but not exclusively by, the provision of grants/gifts; memory making days out, and; help towards everyday essentials.
