Fighting for Fliss

Hello All
Over the next few months a group of our family and friends will be running a few events to raise money for Alder Hey Children's Charity and Children's Tumor Foundation:
> 20+ family & friends running 5k on 12th of Aug, including Fliss and Emmeline (big sister) in the running pram, and Sue Dawe (nanny) who has previously never run more than a bath!
> Maria Dawe (mom) running 10K and Greg Dawe (dad) running half marathon in delamere forest on 10th Sep
> Greg also planning to run Chester Marathon on 8th Oct and London Marathon in Apr’18
> Matthew Parry (cousin ) Triathlon 2017

We've chosen these charities because they have already greatly improved the outlook for Felicity's life and will continue to offer so much hope to our family and other children with your support.

Felicity was diagnosed with Neurofibromatosis (NF1) at 3 months old after a tumour was found in her neck , severely compressing the top of her spinal cord. NF1 effects 1 in 3,000 people, there are many manifestations but the most common is people with NF1 grow tumours along nerves anywhere in or on their body. If these tumours occur in critical areas of the body, such as in Felicity’s case, the outlook for most is devastating. This is because there is no effective licenced treatment and surgery is often not an option or at high risk of severe nerve damage. Incredibly the amazing neurosurgical team at Alder Hey were able to remove most of the tumour compressing the spine. However the tumour compromised the structure of her spine so she now wears a cervical collar brace. Several months later it began to regrow.

As part of the journey to stabilise her spine, in February 2017 Felicity had a halo brace fitted using the new hybrid theatre at Alder Hey. Felicity was a feature on several regional and nationwide BBC One programs as she was the first neurosurgical patient to use the new theatre which is a world 1st in paediatrics as it includes a built in CT scanner and was entirely funded by Alder Hey's Children's Charity at a cost of £1.2million. In the near future Felicity will have spinal fusion surgery and the hybrid theatre will improve the chances of success.

In addition to Alder Hey Children's Charity we'd also like to raise money for Children's Tumor Foundation, CTF. This charity is the biggest driver globally of research to fight and End NF. They are behind the new chemotherapy drug (MEK inhibitor) currently undergoing trials in America and the UK, giving hope to children with inoperable NF tumours. We are so grateful that in October 2016 Felicity was given the opportunity to begin use of this new drug at Great Ormond Hospital, with the hope that it will halt the growth of her tumour or even reverse it. She will likely take a daily dose for 1-2 years and has generally tolerated it well. We are currently awaiting the results from her recent MRI to know how it has affected her tumour.

So far the trialled MEK inhibitors have shown great success shrinking tumours up to 50%. With continued support we hope this drug will successfully gain licences and made available to give the same hope that we have for Fliss to many more children and adults.

Please consider donating to one or both of these invaluable resources, which rely on donations to continue to help our Fliss and other children like her with new cutting edge treatments:
To donate to  Alder Hey's Children's Charity please click 'donate' above.

To donate to Children's Tumor Foundation please go to our CTF fundraising page: 

https://join.ctf.org/FightingforFliss

Despite Felicity’s challenges she is an unbelievably happy and brave girl, with the sweetest and most outgoing personality. We are so grateful for the amazing medical attention she receives and the love and support from our dear family and friends.

Maria & Greg Dawe xxx