The devastated mum of a three-year-old boy who has been diagnosed with a rare and untreatable muscular disorder has told how she is making memories for him before his condition worsens.
Steph Gall-Edwards was devastated when she was told little Lincoln, who was conceived thorugh IVF, had Duchenne Muscular Dystrophy which affects every part of his body and mans he will soon be in a wheelchair.
The genetic condition affects the muscles, leading to wasting that gets worse over time.
Speaking to Staffordshire Live, Steph has shared her devastation at the diagnosis and told how the family are being supported by the Me&Dee charity to allow them to have precious family days out. She was put in touch with the charity through a friend.
She said: “Lincoln’s diagnosis was massively devastating. All three of our children were IVF babies – our eldest, Clara, and twins Lincoln and Iris. They’re all named after grandparents who left us money to have another go at IVF when we had Clara. We went through so much to get them.
“It’s horrendous but there’s nothing we can do. We can’t change what we’re going through. I don’t care if my kids draw on my walls, or if we have a food or a water fight – because it’s fine. Life is too short to care about the little things. We have learned that the hard way.
“Just after Lincoln’s diagnosis, Me&Dee were in touch with us very quickly. They paid for us to go away for a night to Gulliver’s Kingdom in Matlock and we had two days in the theme park. It was just what we needed at the time because we were just so lost.
“The condition affects everything: cardio, respiratory, vocal chords, heart, lungs, arms, legs – everything that’s a muscle is affected. He can’t jump. He can’t run. When all the kids are playing he’s pretty much left behind. He struggles going up and downstairs. He can’t speak very well because his vocal chords are affected.”
Steph said Me&Dee was a source of invaluable comfort as it meant the whole family were able to enjoy some relaxing breaks together away from the stress of hospital appointments.
The charity helps families where a potentially life-limiting – and often rare – illness is diagnosed, by providing everything from days out, short breaks, visits from Santa and comfort packs for emergency hospital visits.
Lincoln and his family have also enjoyed a day out at White Post Farm in Nottingham, complete with a close encounter with some adorable owls, which Steph said was a wonderfully relaxing experience that they all thoroughly enjoyed.
Maria Hanson MBE, founder and unsalaried CEO of Me&Dee, said the charity was now seeing hundreds more applications from all over the Midlands than it was before and was focusing on providing days out and short breaks as – very sadly – it was seeing many more families with very little time left together.
She said: “We’re receiving literally hundreds of applications at me&dee and we provide every family with a bespoke package of support. Our only aim is comfort: we’re here to make sure families can have special times together so that if the worst happens and a loved one passes away, they will have made some happy memories together.
“But we do need support. We’re appealing to businesses to consider adopting me&dee as their charity of the year. Families who enjoy a day at White Post Farm have a smashing day complete with a private animal encounter, lunch, and a VIP visit to the resident Go Active Falconry including the chance to hold owls.
“The effect of this is amazing for a family who may often be separated by hospital long term stays. This has been set up with the huge support from the owners of Go Active and care so much about me&dee and the families we look after, offering a VIP visit every Wednesday of the year.”
Steph said that, despite all the hard times she and her family are going through, just knowing they were benefiting from the support of Me&Dee was of great comfort.
She said: “We have not got a lot of money and we do struggle. Maria and the team also always include Clara and Iris. So often the siblings are forgotten as people concentrate on just the poorly child, but the girls are affected too. It’s hard for them and me&dee make sure they are always included which is so important. Having a charity like me&dee do things for us that we wouldn’t otherwise do, and just to know that people do care – I can’t thank them enough for what they’ve done for us.”
The charity is appealing for businesses to adopt them as their charity of the year, so they can help all the hundreds of families now applying to them for help.
To find out more about how to support me&dee, see www.meanddee.co.uk
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