Brave Tayen's incredible journey

This is The West Country: PHOTO: Geoff Hall PHOTO: Geoff Hall

THE family of a little girl suffering from multiple brain tumours have set up a fundraising group in her name.

Brave Tayen Gilbert, who will turn two years old at the end of September, suffers from a genetic disorder called Neurofibromatosis type one and is also undergoing chemotherapy treatment for several tumours on her brain.

Tayen's mum, Kali Gilbert, 31, said her daughter's tumours cannot be cured and has set up a group, called Tayen's Journey, to keep family and friends updated with Tayen's progress and to raise awareness about her condition.

Following a seizure at home over the summer, Kali and husband Kevin, 34, rushed Tayen to Musgrove Park Hospital in Taunton where doctors carried out a number of tests and scans before finding the tumours.

Kali told the Mercury: "We knew something was not right when Tayen's development was delayed and she could not walk.

"When we found out, devastated does not even come close but part of us was almost relieved that we did not give up fighting in the first place to find out exactly what was wrong because we knew something was not right.

"She is an amazing little girl who can light up a room with her smile alone."

Tayen has three older brothers, Matthew, eight, and six-year-old twins Connor and Lucus.

Kali urged other parents who notice similar symptoms in their new-born children not to give up fighting for extra tests until they get a definitive diagnosis.

The family want their group Tayen's Journey to gain charitable status but they need to raise around £5,000 to do so.

They held a bag packing day at Morrisons supermarket in Bridgwater and Kali plans to do a sponsored head shave in November to help raise some of the funds.

Tayen's aunt, Kade Beck, said: "It's been absolutely devastating for the family.

"Tayen is so young and so small and she already has epilepsy. It's just heartbreaking.

“The support from friends and family has been great.

"We have an amazing group of people around us and we hope to raise awareness of the condition, as not many people know much about it.”

If you would like to support the group, click here. 

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