We are Rachel and Jack and this is our beautiful 7 year old daughter Carys.
We live in Sydney but are originally from the UK: Carys was born here in Australia.
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 our family felt when hearing this news. The sadness of the prognosis of this disease is completely overwhelming and we cannot imagine life without Carys. We cannot accept that our lively, beautiful, witty, kind and loving little girl will never grow up, or that her little sister Maya will have to live her life without the support and love of her wonderful big sister.
Carys was immediately put on a course of daily radiotherapy treatments, which ends in early March 2017. 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, we 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 of chemotherapy.
Recently, a family member in the UK informed us about a ground breaking DIPG research trial in the UK, being led by Professor Steven Gill ( https://youtu.be/NNs-vpxWskk), a consultant neurosurgeon at the University of Bristol, along with Dr Stegios Zacharoulis, a paediatric oncologist. They are now leading the world in using a neurosurgical method of direct drug delivery to the brain called Convection Enhanced Delivery (CED). This method involves the surgical implementation of very fine catheters into the brain using a dedicated robot technique.
As CED delivers the appropriate drugs directly to the tumour, it bypasses the blood brain barrier. This technique has proved to be safe and there are some very promising signs that this method of treatment is proving effective, with few 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, but we now urgently need your help to fund her treatment, which will include CED brain surgery and the ongoing drug treatments.
This DIPG CED drug research trial is not only vital for Carys, but for all children with DIPG now and in the future. Carys is a blessing to her family and friends and we all desperately want to give her this chance, as we believe it is her only chance.
Please help us fundraise and spread the word, so we can help Carys. Funds raised will go directly to paying for Carys’ CED surgery and subsequent drug infusions which will be ongoing.
Whether you can help raise funds through a sponsored activity, or by giving a direct donation, we thank you from the bottom of our hearts.
Rachel, Jack and family.