Nichole’s Fundraising Story

Nichole, Mum to Kyson who is living with Dravet Syndrome, puts the fun into fundraising with her community days in aid of Dravet Syndrome UK.

We asked Nichole to share more about organising super fun fundraising days in her local area.

“My son, Kyson, was 7 months old when he had his first seizure. We received the diagnosis of Dravet Syndrome when he was 18 months. Nothing could’ve prepared us for how hard it is watching someone you love go through so much on a daily basis. We never take anything for granted and appreciate all the little things in life.

As a family, we try to do something to raise funds and awareness for Dravet Syndrome UK each year. Kyson’s Dad and Uncle braved heights by doing a skydive, and a group of us had so much fun tackling an Inflatable 5K obstacle course.

For the past couple of years, I’ve organised a charity fundraising day, with lots of activities as an event for all ages. I have the support of Kyson’s older brother, Corbaley, now aged 13, who loves to help me get everything arranged and set up. We have everything from a raffle, tombola, stalls, food vendors and prize bingo, to a bouncy castle, inflatable dartboard football competition and hair braiding.

Although it’s a lot of time and effort to organise it all, it’s definitely worth it! Everyone has such a fantastic time on the day. I like to aim to raise at least £1,000 if possible, but we’ve raised way more than that – £1,692 in 2024 and an absolutely incredible £2,238 in 2025! I couldn’t do it without everyone that helps on the day (family and close friends), each and every person who turns up and gets involved in the fun, and all the local businesses for their kind donations of raffle prizes and vouchers.

Eight-year-old Kyson joins the event at the start, before it becomes overwhelming. He is non-verbal, but such a happy boy who doesn’t let anything stop him. He’s so brave and loving – such an inspiration to all who know him.

I am so proud to be able to raise awareness and funds for a charity so close to our hearts. Dravet Syndrome UK has helped us so much, especially in the first few years when it was all so new. They gave advice and supplied a monitor through the Seizure Monitor Fund, which we still use to this day.

The annual Center Parcs family weekend away, with medical crew onsite all weekend, is a huge help. Just knowing that support is on hand if we need it is amazing as normally we’d have to do all the research into local hospitals beforehand. The sibling activities during the weekend are brilliant, as siblings unavoidably have to miss out on some things at home. Dravet Syndrome UK put so much thought into making it such a special few days for all the families who attend.

I would encourage anyone who is thinking of raising funds for Dravet Syndrome UK to go for it. However big, or small, it will help such a good charity. It makes fundraising feel more special knowing that the funds raised go towards supporting families through gifting life-saving equipment, family connection and meetups, educating professionals and funding research into this complex condition.”

We want to say a huge thank you to Nichole, Corbaley and all of their friends, family and local businesses who’ve been involved in their fundraising day, inspired by Kyson.