Rye’s destination store Ethel Loves Me will be supporting the charity Childhood Tumour Trust with a dedicated window from Friday May 13 to raise awareness about the charity and by making a contribution from its takings on May 17, which is Childhood Tumour Trust Day.
Childhood Tumour Trust is a national charity, founded by local resident, Vanessa Martin, in 2016 to support children, young people and their families following diagnosis of a genetic condition called Neurofibromatosis Type 1 (NF1). Whilst NF1 is a little-known condition, it is actually more prevalent than cystic fibrosis, Duchenne muscular dystrophy and Huntington’s disease combined.
Vanessa’s daughter, Nicole was diagnosed with NF1 when she was a child. At the time there was very little support and knowledge amongst healthcare professionals and the education system – despite the fact that most children with NF1 also have learning issues.
Nicole is now 24 and completing a degree, yet she struggled with school throughout her childhood, frequently missing lessons due to poor health and hospital appointments, and subjected to bullying for being “different”. As a Mum watching her child struggle, Vanessa made the decision that no other child with NF1 should feel isolated and hence, set up Childhood Tumour Trust (CTT).
The original premise of CTT was to offer residential camps to children, allowing them to grow in confidence, meet and socialise and providing families with some respite. During lockdown, Zoom lessons were introduced in a diverse range of subjects, from cookery to sign language. These sessions meant that children who could not attend camp, or other events were also able to socialise, albeit virtually. Family days, including two special days out each year to theme parks, ensure that siblings are also included.
CTT aims to support parents and carers right from initial diagnosis, advising on symptoms, procedures, the questions to ask and where to obtain further advice and support. In addition to offering vital support to families, CTT works tirelessly to improve awareness of NF1 within the medical profession, and campaigns to improve care and diagnosis both within NHS England and at government level. CTT is also currently working with an organisation linked to the University of Cambridge and Cambridge Hospital to understand what research is required to improve care for those affected by NF1.
For further information about the charity, please visit the website at https://www.childhoodtumourtrust.org.
Image Credits: Matthew Forbes-Dale .