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Running for Harrison – Rachel’s first half marathon hits 10 times fundraising target

A mum of three from Stoke on Trent who is running her first half marathon next month (November 14) has been overwhelmed by the support shown for Children’s Liver Disease Foundation (CLDF), a charity which means a great deal to her family.

Rachael Sinclair, 38, started doing Parkrun three years ago but was inspired to take on a bigger challenge after her little nephew, Harrison (now 10 months old) was born with the rare genetic condition, Alagilles syndrome. Harrison’s mum, Kirsty, 36, who lives in Stone, explains the impact this had on their family:

“At our 20 week scan, we were hit with the bad news that our baby boy had something wrong with his heart, kidney and bowel. We were referred to Birmingham Women’s Hospital, who confirmed that there were problems, but were unable to be specific. When Harrison was born at 37 weeks, he was very jaundiced and was placed under a UV lamp to try and relieve this, as well as undergoing investigations into his heart. We were allowed home after four days, and Harrison finally got to meet his big sister, Thea.

“Our family time was to be short-lived, however. When Harrison was three weeks old and our health visitor commented during a routine check that he was still jaundiced, prompting us to bring him back to hospital. We quickly became aware that this was serious when we were admitted immediately to Royal Stoke Hospital and then transferred to Birmingham Children’s Hospital, where they have a specialist liver unit.  The consultants there wanted to test for genetic conditions, and Harrison underwent a week of tests, examinations and x-rays. Early in February we had confirmation that Harrison has Alagilles, a rare syndrome which affects around one in every 30,000 babies.

“Obviously, this kind of news is a shock – we had no idea about Alagilles before this. The hospital staff had already given us information booklets from Children’s Liver Disease Foundation, but following diagnosis, they signposted us to what support was available and we used the CLDF website to explain Harrison’s condition to family members. We wanted to be aware of the facts rather than searching the internet for unverified sources of information.

“Harrison’s condition affects him in many ways. He needs to be fed through an NG tube, he doesn’t sleep well, he itches all the time and he’s still very jaundiced. He’s crawling now and trying so hard to be a happy little boy but needs reassurance all the time. He’s lucky to have such a brilliant big sister. Seven-year-old Thea has handled the situation so well, she helps us give his medicines through his tube, and the love she has for him is absolutely heart melting.

“This has been a hard year to say the least and it’s a huge reassurance to know that not only do we have the expertise of the medical staff at Birmingham Children’s Hospital, but that CLDF are experienced in dealing with all scenarios relating to his condition, such as the psychological, social and financial aspects. They have also been great in terms of connecting us to a community of other parents and carers who have been invaluable in terms of us not feeling isolated. It has been a massive help meeting people going through similar experience and knowing that there is always somebody available to offer guidance and advice. If Rachael’s run can help raise awareness of this rare condition and funds to help us and others, then that really is something amazing.”

Rachael herself has been overwhelmed with the response to her fundraising:

“I wanted to run for CLDF to raise awareness of the Foundation and the work it does for people like my amazing brother and sister in law. I picked the Alton Towers half marathon because it’s local and I get a day at the theme park afterwards – although I’m not sure if I’ll be up for roller coasters after a half marathon! I originally hoped to raise £250 but have now achieved ten times that total.  It’s amazing and I’m blown away by people’s generosity. I think it’s testament to how well thought of and loved Kirsty, Mark, Thea and Harrison are. They really are an incredible family and Thea is the most amazing big sister”.

Alison Taylor, Chief Executive of Children’s Liver Disease Foundation commented: “CLDF is the only UK charity dedicated to fighting all childhood liver diseases, by providing information and emotional support, funds for research and a voice for all those affected. We rely on voluntary donations, so we are delighted to hear that Rachael is planning to do her first half marathon for us and that she has had such an amazing response. The funds she raises will enable us to make a difference to Harrison and children like him throughout the UK.”

You can support Rachael’s Half Marathon at https://www.justgiving.com/fundraising/rachael-sinclair-1

 

 

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