This year the TSL team are fundraising for two charities very close to our hearts: Nerve Tumours UK and Abby’s Heroes.
In 2022, our Technical Director Dan Jarnak and his family were introduced to the charities after his 2-year-old daughter, Evie, was diagnosed with Neurofibromatosis. The condition, known as NF1, is a genetic condition that causes tumours to grow anywhere around the body. Evie has tumours on her optic nerves which are affecting her eyesight. She is severely visually impaired as a result, and here’s where the two charities have been supporting Evie, Dan and his wife, Rachel.
Evie’s NF1 Journey
Dan said: “Evie’s journey began when the birthmarks we thought she had been confirmed as café au lait spots, which are a common first symptom on Neurofibromatosis type 1, or NF1 as it’s often known. Her diagnosis of NF1 was then confirmed in November 2022 just after she turned 2.
Although the tumours on her optic nerves are benign, she is undergoing a weekly chemotherapy session to stunt the growth of the tumours. NF1 is a genetic condition that will not go away, but the treatment will hopefully protect her eyesight from further deterioration.
Evie’s chemotherapy course will last for at least 70 weeks with frequent monitoring tests in between, and fortunately her chemotherapy is a non-aggressive form she continues to be her happy, charismatic self for the most part.”
Here’s how TSL’s fundraising will support the two charities:
Nerve Tumours UK provides crucial medical and non-medical support to the 26,500 people in the UK living with Neurofibromatosis. Their funding supports research, provides a network of healthcare professionals for Neurofibromatosis patients, hosting events for patients and the team runs a national support helpline.
TSL’s fundraising will be localised to the Hampshire, Dorset, and IOW region, supporting the work that Evie’s Specialist Nurse, Tracey Keynon, does. Tracey will be Evie’s Specialist Nurse for the foreseeable future, supporting the Jarnak family through her initial treatment and supporting Evie as she grows and hits further milestones.
Abby’s Heroes supports the patients and families of the Piam Brown and Teenage and Young Adult units in Southampton General Hospital. Their support helps to reduce the physical and emotional stress on patients and the financial and emotional impact on their families. The team provides play therapists, counselling services, and runs weekly Pizza and Ice cream nights, provides snack boxes for when children are admitted in an emergency, and End of Treatment Awards for children.
Our fundraising means that this small charity can continue to make a difference in the lives of children and their families when they need it most.
Help us make a difference
Our fundraising journey can be followed on our Just Giving page, where donations can also be made.
Nerve Tumours UK https://lnkd.in/eCfzBB_V
Abby’s Heroes https://lnkd.in/eVmTUp_s
