This is our good friend Jack and his beautiful 7 year old daughter Carys. On 13 January this year, after a few weeks of unexplained headaches and sporadic vomiting, Carys underwent an MRI scan to (presumably) rule out the worst case scenario. Instead Carys was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG), a very rare and aggressive form of brain cancer found deep inside the brain stem, which sadly particularly affects young children.

DIPG is inoperable and there is no cure. The only treatment a child can expect is a course of radiotherapy, to help with the symptoms caused by the tumour in the early stages of this devastating disease. With radiotherapy the prognosis for recovery is less than 1% and life expectancy is 9 months to a year after diagnosis. There are no words that can describe the complete and utter shock, grief and helplessness that their family felt when hearing this news. The sadness of the prognosis of this disease is completely overwhelming and they cannot imagine life without Carys. They cannot accept that their lively, beautiful, witty, kind and loving little girl will never grow up.

Although she is not aware of the terrible prognosis of DIPG, she has been so brave and is an inspiration to us all. Like any family finding themselves in this heartbreaking position, they are praying for a miracle. One of the major obstacles to the effective treatment of DIPG is the blood brain barrier, which prevents the free passage of drugs from the bloodstream into the brain. To date, there is no evidence that traditional IV chemotherapy has shown any benefit to children with DIPG, plus they also suffer significantly with the unpleasant side effects for the child.

Carys has been accepted into the DIPG CED research trial in London which is scheduled to start in April this year. Our 3 peak challenge is to help to fund her treatment which will include CED brain surgery and the ongoing drug treatments.