“The Difference a Day Makes”

Steve is a Jessie May Nurse who goes above and beyond for the children, and families, he supports. He has been a Jessie May Nurse for 2 ½ years, and provides vital respite care in the homes of terminally ill children. Steve is combining his passion for his job and for running – and taking on a 24-hour running challenge to raise money for Jessie May!

Nurse Steve training ahead of his 24-hour run for Jessie May

On July 20th 2019, he’ll don a purple Jessie May running vest and prepare for a gruelling 24 hours of non-stop exercise for his own fundraiser: “The difference a day makes” – through the Conti Thunder Run. Steve aims to raise £3,000 for Jessie May through the challenge – the funding required to run our charity for 1 day. You can now donate on his Virgin Money Giving page here.

Steve, who lives in Bradley Stoke in Bristol, said: “Jessie May is very close to my heart. I work for the charity as one of the nursing team that cares for the children on the Jessie May caseload. We are just a small part of an amazing team that enables Jessie May to function and provide support to families.

“As a Jessie May Nurse, I understand the enormous difference Jessie May’s support makes to families with a terminally ill child. The families the Jessie May nurses support are all incredible and I know how important it is that we are there to help. Many rely on our respite visits and emotional support and have said they’d now be completely lost without us.

“This is why I want to help raise money for Jessie May – I have seen the impact we have on families firsthand. The challenge that I have decided to undertake is to run as many 10km laps as I can in 24 hours through the 24 Hour Conti Thunder Run. It’s pretty extreme! I aim to raise at least £3,000 for Jessie May, as this is what it costs for the charity to run for 1 day.

“I know caring for a terminally ill child is an exhausting, 24-hour task; physically and emotionally. This 24-hour run is quite symbolic of the 24 hour care the children require and I hope by completing the 24 Hour Thunder Run, it inspires people to talk about Jessie May, and why our support is vital to families, and make a donation if they can.

“If I raise money for Jessie May during this day of non-stop exercise, it could make a difference to not just 1 day, but many days, for many families who need that extra bit of support.”

Steve added: “I have taken on a 24-hour run in a team, but never before attempted the challenge alone! I’m determined to keep going and raise as much money as possible for an unbelievably worthy cause – through my online fundraising page. If you can make a donation, no matter the size, you’ll be helping us help families, which is just incredible. Please do make a donation if you can! I’m now counting down until the big day – on July 19th I will journey up to Walton-on-Trent with my family for the 24 run and fingers crossed it all goes well!”

Jessie May Child: Alba

Steve and Alba 2
Nurse Steve with Alba on a respite visit

Steve looks after children like Alba. Alba is 2 years old, and lives with her younger brother Coupar, mum Roz and dad Adam.

Alba has Congenital disorder of glycosylation type 1D; an inherited condition, which means she cannot walk or talk, and needs 24/7 care and attention. She suffers from seizures on a daily basis, and has to take 14 types of medication each day. She has poor vision, very limited body movement, and is fed directly into her stomach through a syringe.

Steve welcomed Alba and her family to Jessie May when she was referred to us by an Epilepsy Nurse. Due to the severity of her condition, Alba’s family and Steve were continuously told she would not live to reach 2 years old, and that her next chest infection could be her last.

Steve said: “It’s truly an honour to run and raise money for families like Alba’s. It’s an honour in itself being invited into their home every month! They’re an amazing family with an astounding amount of strength and optimism.

“Alba’s visits tend to be very creative! There’s lots of painting and card-making and cuddles.  My aim is to get her out for a walk soon, as she’s normally too poorly to take outside during my visits. That’s why it’s vital we can continue to offer at-home nursing care; it means we come to the families, and they don’t need to worry about travelling to us.”

Alba’s mum Roz makes the most of her time when Steve comes to visit. She said:

“Jessie May is so important to us because we totally trust the nurses.”

“The nurses know Alba so well; they understand how she can communicate, and her needs. They can be trusted to feed her, put her to bed, and give her medication when it’s required. Not many people can do all this without someone else there to support them! Knowing Alba is in safe hands means the world to us.

“The respite visits are a real lifesaver for me and Adam. Coupar, our son and second child, was born when Alba was around 2 ½ years old, so it became even more full-on at home. During the respite visits, I can go for a coffee and have a catch up with Adam and my mum. A lot of the time I spend the few hours’ break doing something quite boring though – like shopping, or laundry! I try to use the hours to be productive, but it’s also nice to use the time for myself.

“I am amazed at what Steve’s doing with the 24-hour run – I am sure he will be amazing as I often see him cycle to and from his visits to us!

“We wish him luck for the day and can’t wait to hear all about it.”

How to sponsor Nurse Steve

Steve is currently training around the clock to prepare for the 24-hour charity run. He said: “I am actually really excited for the day to come! I hope to raise as much money as possible so Jessie May can continue to support families, and also welcome additional children with life limiting conditions to our caseload.

“I will also be blogging about my training ahead of the day and sharing updates on my progress, so keep an eye on the Jessie May blog page and my fundraising page too.”

If you would like to make a donation on Steve’s online fundraising page, please click here.

Steve added: “I also hope to inspire supporters to fundraise for Jessie May! Hopefully this will encourage others to get involved in some way and help raise money for and awareness of Jessie May. There are so many ways people in can support the charity – a 24 hour run is one of the more physically demanding choices! If anyone would like to help, visit our website at www.jessiemay.org.uk where you can find information on volunteering and fundraising opportunities.”

For more information about fundraising opportunities and events, please contact the Jessie May Fundraising Team on 0117 9582174 or fundraising@jessiemay.org.uk.

Good luck Steve – everyone here at Jessie May is rooting you on!