The focus of Felicia’s Courage is on making a positive treatment impact for children diagnosed with DIPG, the same cancer that took Felicia from us. Sadly, there is no cure known for children with DIPG, and despite significant effort, most children are treated with radiation, try at least one clinical trial drug and are then left without any further options. This is simply an unacceptable outcome.
Most parents are provided with information from the institution where they choose to have their child treated, or the one closest to their home. Most parents also are provided with advice and guidance from other bereaved parents as they desperately seek to find a way to save their child. The internet remains as a pathway to information as well as misinformation and unfortunately, can be populated by a few individuals that can do harm.
To provide children with DIPG and their families greater hope that one day other parents will not have to hear the words that we heard when Felicia was first diagnosed “all we can offer is palliative care". We had to look it up as we had never heard the words before – it left us numb. We could not believe that in 2014, the medical and scientific worlds could not help our beautiful, bright, amazing 3 year old child to have a brighter future, or any future.
To provide hope that one day soon the funding research aimed at accelerating the creation of aggressive multimodal combinatorial therapy protocols for the creation of effective clinical trials is the foundation of that hope. This research conducted at the dedicated DIPG laboratory in the UK will seek to create a pathway for survival from the diagnosis of DIPG through the underlying understanding that in order to successfully treat the deadliest and most aggressive paediatric brain tumour, equally aggressive plural pathways in combinations, properly sequenced and aggregated, must be validated.
It’s time to do something different, after 50 years of pursuing the same medical process and philosophy which has failed each and every decade. The needle of time of mean overall survival for DIPG kids has not increased in all those years. Felicia’s Courage is supporting G-TAC, a dedicated laboratory and other initiatives to pursue a different medical and scientific pathway, one that can be funded to bypass the opposition of vested interested and entrenched thinking, and offer the next cycle of kids with DIPG much greater hope and a chance of a longer life than Felicia was ever offered.
We have come to fund this particular research project as be believe that if we carry on doing what has been done in the past we cannot possible expect a different outcome.
Is there an Alternative?
We believe so that is way, we have chosen as one of our main funding effort to be directed towards DIPG TAC research lab, and help those parents that are willing to make the right decision early on before the take the one way system.
Will we get to a different place? Only time will tell but we know for sure that doing what has been done in the past will always, always take you down the same place of no return, desperation and leave you empty.
This year Francesco will be running the London Marathon not only for Felicia's Courage, but also for Children with Cancer.
The London Marathon is a 26.2 mile/ 42km run and takes a lot of hard work and determination to complete. With that in mind we have set a goal of raising £2000 per km (£1000 per charity) totalling £84,000 and we need your help!
To donate please visit: Felicia's Courage or Children with Cancer
Please spread awareness and look out for information at Casa Mia. Any donation, BIG or small is a step closer to helping many lives!
We want to thank you for your contributions and continued support in raising awareness!
Francesco and Marta Mazzella