Today is World Neurofibromatosis Awareness Day (Tuesday 17th May 2022). And Hippychick has announced it will be working with the Childhood Tumour Trust, an organisation devoted to raising awareness for this rare genetic condition.
Despite its rarity, Bridgwater, home to Hippychick HQ, has its share of sufferers from Neurofibromatosis (NF). Those we know about include Mike Bird, Hippychick employee, two of his children, as well as Tayen Gilbert.
Read below an extremely moving account about how NF has affected Tayen, now aged 10, written by her mum, Kali Gilbert. Please do follow Tayen’s Facebook page, @tayensjourney to show your support and help spread the message about NF. Thank you.
At 22 months old, Tayen had a prolonged seizure during the night at home. We were rushed to the hospital and she was given a cocktail of medicines and numerous tests were done. Nothing specific came back but we already had concerns about Tayen’s vision, cognitive decline and were also aware of a genetic condition called Neurofibromatosis that her Dad had, so she had an emergency MRI. I knew what they’d find but the severity floored me.
Tayen had extensive bilateral optic glioma tumours that extended from her optic nerves through to the back of her brain and she was diagnosed with NF1 and epilepsy. The next few weeks were a blur of hospital appointments over two hospitals and the gut wrenching news that Tayen needed to start chemotherapy straight away to try and save what vision she had left. Sadly, Tayen lost all of her remaining vision just 6 weeks into the chemo protocol but chemo continued for 18 months to try and preserve other brain functions.
Tayen is now 10 years old and the journey since finishing that initial chemotherapy protocol has been like a rollercoaster. In that time she’s needed bilateral shunts placed in her brain as the tumours have caused too much fluid to build up, three more chemo protocols and just last year she had major brain surgery to try and remove a new brain tumour. Her epilepsy, memory and mobility have all been affected on top of the damage all the chemotherapy has done however Tayen loves telling jokes, going to the beach, jumping in muddy puddles and making people pictures!
If you would like to make a donation to the Childhood Tumour Trust, please click on the following link. https://www.hippychick.com/shop/charity-donation/
To find out more about NF, please visit: Childhood Tumour Trust – Supporting children, families affected by NF1