Emma Moore, 27, from Chelmsford is taking on the Southend Half Marathon on Sunday 12th June to raise money for Little Havens, a hospice based in Thundersley.
Her son Mason, two, was born with a rare genetic, metabolic condition NKH (Non-Ketotic Hyperglycinemia) which means his body cannot process glycine. There is no cure and at birth, Mason was put on life-support. His parents, Emma, and Kris, were told he would not survive. They were taken to Little Havens Hospice for end-of-life care, however once Mason was taken off life support, he started breathing on his own.
Emma says, “We were given the option of having his tubes removed in hospital or coming to Little Havens. We’d heard of it, but we had no idea what to expect. They said they could support us as a family and whilst Kris and I knew we were strong, we wouldn’t be strong enough for our other son Riley.
“We tried to stay open and talk about everything with him, but we knew we needed extra support. They helped us grieve, because we did grieve for Mason while he was still alive, and they helped us make memories. We’ve got hand portraits at home, and they took photos of us all together.
“We were at Little Havens for a week and Mason had been taken off life support, but he was still breathing. It was amazing. But at the same time everyone was sort of looking at each other thinking, what now?
“The Care Team was amazing during that time. They gave us space to take it all in but still looked after us, making sure we were eating – they even did all of our washing!”
Throughout the pandemic the family used the Little Havens Hospice at Home service and then visited the gardens until respite and activities within the hospice opened up again.
“We don’t know how much Mason can see or hear but we know that he reacts to light, so he loves the sensory room at Little Havens and Riley likes it too. There aren’t many places we can take them that both boys enjoy. At Little Havens there’s plenty of space for Riley to explore too.”
Now Emma is taking on the half marathon challenge to raise money for the hospice which relies on donations to provide its specialist care.
“The Southend Half Marathon wasn’t something I actually planned on doing. I shared the post on Facebook advertising the event as it featured Mason’s picture and then I had people asking me why don’t I do it, so I thought why not? Whilst we don’t have much money, it is a nice way to help contribute to the funding of Little Havens. They do so much for our family that it feels like the right thing for me to do.
“My motivation is definitely Mason. I am not someone who enjoys walking or running. I will park as close to the shops as I can, but he really benefits from everything Little Havens does for us that other people can’t provide the way they do. There will be a day Mason won’t be with us, but we will always have the memories, especially the ones Little Havens helped us to make. Other families in the future deserve the same help we have had.
“Life without Little Havens would be difficult. We’d probably feel quite isolated, they’re the only people who have been able to bring us together as a family. Mason has a really good quality of life at the moment because they make sure enough is accessible.”
“By fundraising for Little Havens, you can help families like ours to live to our fullest potential. Little Havens isn’t that doom and gloom place you might expect, it’s magical.”
Registration is now open for the Southend Half Marathon taking place on Sunday 12th June. The course is fast, flat and traffic free making it ideal for first time half marathon runners as well as a favourite for seasoned runners looking to achieve a personal best. Once runners have completed their 13.1 miles, they will receive a special commemorative medal.
Every person who registers will be supporting families like Emma’s, but can only continue thanks to people’s kind donations and sponsorship, such as those raised through events like the Southend Half Marathon.
To sign up visit www.havenshospices.org.uk/southendhalf