Fundraiser for Worksop girl, 15 months, with rare genetic epilepsy hits £3k
A pair of runners have completed a marathon challenge raising £3,450 for a children’s hospice supporting a 15-month-old Worksop girl suffering from a rare form of genetic epilepsy.
Little Daisy Warnes who was diagnosed with SCN2A endures daily seizures – around 100 on a bad day, 30 on a good day - as a result of the condition.
Bluebell Wood serves as a lifeline to Daisy’s family providing respite care and support to mum Jade, dad Gareth and five-year-old sister Poppy.
Keen to give something back family friend Kyle Webster decided to take on the Worksop Half Marathon and recruited Daisy’s dad Gareth to join the mission in a bid to raise much needed funds for the hospice.
The intrepid pair managed to complete the epic race and raise more than £3,450 in the process – smashing the £1,000 target.
Mum Jade, 30, of Thievesdale Lane, Worksop said: “Bluebell Wood is such an amazing support to us, the team provide respite care. The community team will take Daisy in for the day, she has sensory days with them and enjoys the hydro room. We have only just scratched the surface of the support they can offer but Daisy is so calm and relaxed when she is there and it helps us so much as a family.
“The support from family and friends has been amazing too and when Kyle said he was going to run the marathon to raise money for Bluebell it meant a lot.”
Children with SCN2A-developmental and epileptic encephalopathy often experience seizures that start early in infancy, sometimes shortly after birth.
Speaking about Daisy Kyle said: “Despite this challenging journey, Daisy remains a true fighter. The goal is not only to raise funds for this brave soul but also to raise awareness about child epilepsy. Daisy is so adorable and her mum Jade Warnes and dad Gareth and big sister Poppy are so so strong and never ask for anything and take ever day as it comes.”
A ‘Dance for Daisy’ fundraiser is also taking place at SteelYard Kelham, in Kelham Island, Sheffield On November 2 from 3pm onwards. For more information on the event search ‘Dance for Daisy’ on Facebook.
There is still time to donate