Tayen was born an apparently healthy and happy baby. But by her first birthday her parents noticed her development had stalled and then reversed. Tayen was quickly losing the skills she had learnt in her first years; her eyesight also deteriorated rapidly and had 22 months old she suffered a massive seizure. Tayen was taken to hospital and after doctors couldn’t find signs of an infection they decided to do an MRI scan. The scan showed that Tayen had tumours forming along the optic nerve, and can be a sign of neurofibromatosis type 1 (NF1). Genetic testing later confirmed this diagnosis.
NF1 occurs in around 1 in 3000 people and causes tumours to form around the body. Common indicators of the condition include café au lait spots around the body, lumps in the skin and sometimes non-cancerous tumours. There is no cure, and treatment is to halt the growth of tumours and improve symptoms.
Tayen has been through 18 months of chemotherapy to halt the growth of the tumours on her optic nerves, although she has been left blind. Tayen’s mum, Kali says; ‘Developmentally the chemo has set Tayen free. In halting the growth of the tumours she started developing again and has a new lease of life. She has surpassed all expectations. She now walks, goes to a special needs nursery, and she likes swimming, riding her bike and ice skating.’
This year the charity Children and Young People with Neurofibromatosis will receive a Jeans for Genes grant to fund a PGL camp for young people with the genetic condition.
So don’t forget to pay in your Jeans for Genes Day donation, so we can put your money to work helping children like Tayen with genetic disorders in the UK.