A Barrow mum – whose one-year-old daughter died unexpectedly – has climbed Snowdon with other mothers to help the charity that supported them.
Rebecca Luisi, a paramedic, lost her daughter Kieana Victoria the day before her second birthday in 2002 to sudden unexplained death in childhood.
Since then, she has been a part of several fundraising challenges and is set to become an advocate for SUDC UK, a charity which provides support for bereaved parents.
Rebecca, with 11 other mums who lost their children to SUDC, took on the challenge in recognition of the mental mountains they now have to climb daily.
Rebecca said: “My daughter Kieana died the day before her second birthday. There was very little support and it wasn’t until about 2013 that I actually found out about the SUDC Foundation based in America and it was later on that I then met everybody from the SUDC UK group.
“I’ve done a lot of things with SUDC UK, I’ve done the Keswick to Barrow Walk three times and I’ve done it with different people teams and people. For me, climbing Snowdon was equally as important, I want to help raise as much money and awareness as we can to hopefully one day get answers and make sure that people are supported.”
Rebecca added that being a part of SUDC UK and being a part of fundraising and raising awareness was a very important part of her life.
She added: “Making sure parents are supported is very important to me, because I was left many years without support and it was hard. It was isolating because you don’t quite fit in anywhere and it can be quite difficult at times and it still overwhelms me sometimes when I’m in a room of people.
“When we did the walk, we all had different stories, but ultimately we all had the same conclusion, that our children died that were once happy and healthy, they went to sleep and never woke up again. We never got a chance to say goodbye, or hold them or prepare, not that you could ever prepare for a child’s death, but we had nothing and the turmoil that comes from that is immense.
“Everybody wants to ensure that their child did not die in vain, we all want answers we all want our child to be remembered because to us they were the most important thing ever, and we also want to ensure that we can support other families get proper support while sadly, while these numbers are growing while we still have no answers or preventative measures.”
She added that thanks to SUDC UK, she had found a strong sense of community and support which made tackling Snowdon an emotional, but achievable goal.
Rebecca said: “We’re a really good group, we all support each other. We’re all from different walks of life, we’ve got managers, doctors, paramedics like myself, teachers and more, we’re all at different levels of fitness as well, but we were willing to put ourselves through every ounce of that pain to get up that mountain in memory of our children.
“It was quite an emotional thing, the emotions were really more of a challenge, but we all supported each other. Some found it harder than others, but we persevered together as a team.”
Despite varying levels of fitness and preparation, every member of the group completed the challenging route in just four-and-a-half hours.
When the group reached the summit, they placed pictures and keepsakes at the top for photographs as a way of taking their children with them on their journey.
Rebecca added: “I brought a very important teddy of Kieana’s that had a lock of her hair inside it and it came with me the whole journey. People got very emotional at the top of the mountain, but the mums loved the experience so much that they are thinking about doing another.”
The climb also generated a lot of interest and questions from other walkers tackling the mountain, who Rebecca said would stop for a moment to chat with the guides who would share information about the disease.
She added: “It is the fourth biggest paediatric killer, a lot of people don’t realise but there is one in two children dying every fortnight, which results in about 40 children dying per year from unknown causes, which is more than road traffic accidents. The numbers are also growing every year and it’s heart-breaking because you know exactly what that poor parent is going through.
“Every day there are new developments and science, and we have teams of doctors looking into it. We just hope we will find answers and get preventative measures but for now, we’ll keep walking up mountains for our babies.”
According to SUDC UK, more children between the ages one to nine die as a result of SUDC than fires, car crashes and drowning. It also affects older children and despite SUDC occurring every one to two weeks in the UK, there is no Government funding and little awareness around it.
The charity’s aim is to fund research into potential explanations for SUDC to prevent further deaths and to highlight the growing and unsupported phenomenon with the aim of receiving funding and policy support from Government.
Nikki Speed, CEO of SUDC UK, who lost her child Rosie aged two, said: “There is nothing quite like looking another parent in the eye that truly understands the impact of losing your little boy or girl so suddenly and not knowing why.
“Coming together to climb this mountain gave me immense comfort and hope. We would have done anything to save our children and together, we are determined to inspire the support needed to save other children’s lives and stop SUDC. Through research and awareness, we will find answers.”
The group’s fundraising efforts can be supported at www.justgiving.com/campaign/sudcsnowdon22
