Meet The Parents Honouring Their Baby by Helping Others
A couple from Sunderland who lost their baby boy at just 15 months old launched a trust in his name to support families with sick children last year
Louie Taylor was born on 18th July 2022 but spent the first days of his life in the neonatal intensive care unit due to neonatal hypoxic-ischemic encephalopathy (HIE) caused by a lack of oxygen to the brain. A resilient baby boy, Louie overcame hurdles and found a passion for food, toys and playtime. However, following a holiday in May last year he began to display cold and flu symptoms which later turned into breathing difficulties and nose bleeds.
‘He had a cough and cold symptoms that developed into really heavy breathing and wheezing but no one could figure out why,’ says Louie’s mum Shannon. ‘He’d been given inhalers and steroids and nothing was seeming to work for him so we asked for him to be referred to the RVI to see if a specialist could take a look at him.’ Hospital staff hadn’t seen anything like Louie’s condition before, making it difficult to diagnose. ‘It was so rare and all of the different symptoms he had didn’t point in one direction to a diagnosis,’ Shannon explains. Having been in and out of hospital, in August Louie was admitted to the Great North Children's Hospital, where a bronchoscopy revealed damage to his airways. Following a challenging recovery but remaining resilient throughout, Louie left the Paediatric Intensive Care Unit (PICU) at the Freeman Hospital in October last year, and sadly he passed away on 30th October surrounded by his close family.
‘There are quite a lot of charities for known conditions and illnesses, but not for those who don’t have a diagnosis or are still waiting for a diagnosis,’ says Shannon. ‘That limited a lot of what we could do and we immediately saw that as a gap.’ Shannon and Louie’s dad Addison set up Louie’s Trust in tribute to Louie and to support other families. ‘We help people regardless of their conditions and regardless of whether there’s a diagnosis or how long they’ve been in hospital or intend to be. There’s no criteria for the people we help. It’s quite a big thing for parents to ask for help. We both worked full time and we were quite proud of that so to then go out and seek different sources of income or support felt a bit demotivating. It can feel like you’re not doing your best, even though you are in that situation. Being able to offer that support to parents without them having to ask for it is a big part of what we want to be able to do. We work closely with the staff at the hospitals to do that. Our main ethos is to provide a little bit of normality for parents and their children by providing everyday items like pyjamas, blankets, socks, cups, bottles and baby spoons whilst they’re in hospital, as well as things to keep children entertained like colouring activities, toys and jigsaws.’
Their support directory compiles useful contacts for families in need and Louie’s Trust also work with staff to provide Louie's Pillow Pals (soft toys named by the children acting as part of their recovery). ‘With everything we went through with Louie, we had a really good time with him and the staff made it as nice as they could with activities and crafts so we have good memories to look back on,’ says Shannon. ‘Louie celebrated quite a lot of his little milestones whilst in hospital, including his first birthday, and he got a Peter Rabbit book and presents from staff – it was so lovely and unexpected. One of the nurses said that they go out and buy those with their own money because they want to be able to do that for parents. I thought that was so kind and inspiring so we’ve put together packs for the wards so we can give the children books, balloons, banners and cards for their birthdays. It’s the last thing on your mind whilst your child is poorly but it’s a bit of a distraction from everything going on – a nice, normal thing to have and do. We do pull on our own experiences but we also rely on others to tell us what they need and what we can help with. There’s no limit to what we’ll accept as long as it’s accepted by the hospital.’
To provide this support Louie’s Trust run fundraising events and collect donations whilst also selling merchandise. ‘‘Our total cash donations (which we are totally reliant on) have reached more than £8,000,’ says Shannon. ‘To say that in such a short time is absolutely incredible and the amount of support we’ve received from our friends, family, colleagues and those in the local area has been really good. It’s about bringing the community together and helping those who need it the most.’
Louie’s Trust is well on the way to becoming a registered charity. ‘That’s our next big milestone,’ Shannon says. ‘I think it would give us a real sense of achievement to get that status.’
To find out more about Louie’s Trust and to show your support, visit louiestrust.org.
