A determined mum from Merthyr Tydfil will soon be taking on the London Marathon this weekend after being inspired by her son's bravery. After 10-year-old Xavier's battle with limb overgrowth syndrome, Lauren Mackie wants to raise money to help other people going through the same challenges, and says he has been her inspiration for pushing herself outside of her comfort zone.
Lauren is the deputy headteacher at Brynteg School in Bridgend and will be raising vital funds for Great Ormond Street Hospital Children’s Charity (GOSH), which is the marathon's official charity of the year. Her 10-year-old son, Xavier, was referred to GOSH two years ago with limb overgrowth syndrome.
The condition is very rare and doctors at GOSH have been monitoring Xavier closely to help them understand it better and potentially develop treatments in the future. Despite being so young, Xavier had his first operation at nine months old to try and stop the growth in his hand and arm, and at two years old he had the two enlarged fingers on his right hand amputated - but the youngster doesn't let that stop him.
Lauren said: "I might be running a marathon, but it will hopefully be over in about four hours. Xavier’s entire life can be like a marathon sometimes, so I just have to think to myself, if Xav can get through all of that, then I can get through these miles. He’s been through so much, but he’s so strong. He’s my inspiration.”
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Xavier was diagnosed with macrodactyly when he was six weeks old by doctors at a Welsh Hospital. Xavier’s diagnosis is now limb overgrowth syndrome as the condition is not just confined to his hand, but the whole of his right arm and his chest too.
Straight after birth, some of the hospital staff in Wales suggested overgrown limbs can be linked to heart problems, which the family found “difficult”, as nobody understood exactly what condition Xavier had, or what it meant for his health.
When Xavier was nine months old he had his first operation where the growth plates in his fingers were fused to try to stop the growth. Unfortunately, this did not work and his hand and arm continued to grow.
At two years old, he had the two enlarged fingers on his right hand amputated, as they were beginning to inhibit his ability to use his hand, as it was so heavy. And when he turned four, Xavier had another surgery to remove some of the tissue in his enlarged arm, to try and reduce its size.
Lauren said: "We spent a long time researching the condition ourselves and looking for specialists around the world who may be able to help. In terms of Xavier’s health, the past year or two since his referral to GOSH has been a real turning point."
It has also taken time for others to adapt to Xavier's needs. Lauren noted: "Xavier has had challenges along the way with people staring and being unkind to him about his appearance.
"Xavi is amazing. He faces all his challenges with immense strength and courage, and he doen't let his disability stop him doing anything. He loves playing rugby and football, and swimming and tennis. He really doesn't stop. He's my hero."
“It's not just running a marathon. It's running this marathon with Xav in my mind, with the hospital in my mind and with the future in my mind." Considering what is driving her forwards, Lauren believes that the atmosphere at GOSH feels completely different to other hospitals they have visited. She said: “It makes you feel at ease.
“When you’re not getting any answers, you have a constant sense of high anxiety. But in the last two years since Xavier’s referral to GOSH, I think the whole family has had a weight lifted off our shoulders. Just to know that he's in the right place.”
In preparation for the challenge ahead, Lauren has been training hard, taking advantage of the Welsh countryside for long runs, and holding fundraisers with the help of the pupils at her school.
Team GOSH runners taking part in this year’s TCS London Marathon will be raising money to build a brand new children’s cancer Ccentre at Great Ormond Street Hospital (GOSH), as part of Great Ormond Street Hospital Children’s Charity’s ‘Build it. Beat it’ fundraising appeal. To find out more, visit gosh.org/cancer.
And to sponsor Lauren, you can visit 2023tcslondonmarathon.enthuse.com/pf/lauren-mackie
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