<div>Hi, my name is Lizzie Shipton. I'm writing this on behalf of my sister-in-law Emily, and her wonderful son Laurie.<strong><br /><br />Laurie almost lost his life when he was just two days old. Following emergency surgery, he will be reliant on feeding through a line directly into his bloodstream for the rest of his life. His rare and life-changing condition requires home alterations and equipment which his parents cannot afford. Please, read Laurie’s story and help if you can. </strong>
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<div><strong>Laurie’s story: </strong>
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<div>Laurie was born to my brother Nick and sister-in-law Emily in October 2021. Sadly, Laurie was just two days old when he became critically unwell and needed an emergency operation to save his life: his bowel had badly twisted round on itself, cutting off the blood supply. This twisting can affect the bowel with varying severity, but unfortunately in Laurie’s case, the surgery resulted in the removal of over 90% of his small intestine. A few years ago, Laurie wouldn’t have survived; but thanks to the amazing medical team (and – let’s be honest – a miracle) Laurie was given the chance to fight for it, and beat the odds.
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<div>Laurie is now living at the most severe end of the spectrum of a rare condition called Short Gut Syndrome. Prevalence in the UK is unknown, but it affects just three out of every million people each year in the US. Laurie is unable to absorb any fluids or nutrients from food and drink. He is dependent on something called parenteral nutrition (PN) to keep him alive - all the nutrition his body needs goes through a “Hickman line” into one of the large veins around his heart. This line is Laurie’s Lifeline.
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<div>Laurie has spent his whole life so far in the incredible Bristol children’s hospital, over an hour away from home. He has had plenty of ups and downs, facing more in his six months than anyone should deal with in a lifetime. He has battled with some nasty infections, and is recovering from a recent operation which re-connected his remaining bowel to his colon.
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<div>The medical team have begun reducing the number of hours per day that he is hooked up to his nutrition line; they hope that Laurie can eventually have everything he needs overnight so that he can make the most of his daytimes. He is getting stronger every day and is in all other ways a happy, thriving and sociable baby boy who manages to get a smile from anyone who passes him on the ward. The hospital nurses will provide a glowing letter of recommendation for cuddles, giggles, and an enthusiastic deputy ward clerk.
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<div>Nick and Emily now have the most wonderful opportunity to bring Laurie home. After six months of living apart – one of them has needed to be either at home with their toddler or at hospital with Laurie – they will finally be able to enjoy time together as a family of four. This is incredibly exciting news, but there are some significant challenges.
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<div><strong>The facts as we know them so far: </strong>
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<div>- This is a life-changing and potentially life-limiting condition.
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<div>- The bowel may adapt to some extent, but will never grow back to anything like the length it needs to be.
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<div>- It is possible that Laurie will be able to eat some food in the future. If he can, he will likely be very restricted in what he can eat and drink.
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<div>- Eating food might start providing some nutrition if the bowel is able to adapt, but it is more likely that it would be for social reasons.
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<div>- It is highly likely that Laurie will be dependent on PN for the rest of his life.
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<div>- There is a constant risk of infections and complications.
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<div>- The physical symptoms of short bowel syndrome can include diarrhoea, vomiting, cramping, heartburn and fatigue, among others.
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<div>- PN comes with its own risks, including liver and kidney failure.
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<div>- Laurie has the potential to enjoy many of the same things as his peers and do regular things like going to school.
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<div><strong>Keeping Laurie safe </strong>
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<div>The main challenge for bringing Laurie home is the high risk of infection. Infections in themselves can quickly become life-threatening for Laurie; but the consequences of infection also pose a serious threat to Laurie's long-term survival.
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<div>To minimise the risk of infection, it is absolutely essential that Laurie’s line is kept clean and sterile. It simply cannot come into contact with germs from the outside world. This is much more difficult at home, but it is possible to avoid infections by taking the right precautions. This is where Laurie needs your help.
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<div><strong>How you can help bring Laurie home </strong>
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<div>There are home alterations and equipment that will keep the risk of infection as low as possible, but Nick and Emily are unable to afford this. Nick has already given up work to look after his boys and will be Laurie’s fulltime carer when he comes home. Your donations will help keep Laurie safe and give him the life at home that he deserves. If you are in a position to donate, we would be extremely grateful. All donations will go directly to Emily, Laurie's mother.
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<div>What will your donations fund?
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<ul>
<li>Plumbing: Emily &amp; Nick will be handling Laurie’s line to connect and disconnect it each day; to change the dressing and keep it protected. Having access to a hospital grade sink in Laurie’s room will help ensure their hands are totally clean at all times. This is no ordinary washbasin – they must be able to turn off the handles with their elbows and meet other hospital sterile standards to avoid germs.
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<li>Transport: Laurie’s PN involves bulky equipment including a fridge, drip stand and trolley. He will need this everywhere he goes. If Nick and Emily need to leave home with Laurie for longer than a few hours they will need a van to fit it all in.
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<li>Emptying and filling in a garden pond: this contains many germs that would pose a very high infection risk.
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<li>Respite care: Nick &amp; Emily have embraced the challenge of learning how to care for Laurie’s complex needs and will be his full-time carers. However, occasionally they will need to get some help so that they can continue to care for Laurie and his brother.
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<li>Specialist wetsuit: This is specially designed for children with a Hickman line and would give Laurie the opportunity to go swimming. Laurie has overcome so many challenges already, and he deserves the chance to enjoy activities with his peers and family wherever he can safely do so.
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<div>The truth is that Nick and Emily will not discover everything that they need until Laurie is back home with them. Any money not used for Laurie will go towards The Grand Appeal (an incredible charity that has hugely helped Nick, Emily and Laurie*) and to providing support for others with Short Gut Syndrome and parenteral nutrition.
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<div>Thank you for taking the time to read Laurie’s story. Please donate if you can. You can follow #Laurieslifeline on Instagram to keep up to date on how he is doing. It will also aim to provide information and support for others going through similar experiences.
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<div>*The Grand Appeal funds amazing Music Therapists (among many other things). <a href="https://fb.watch/c30xE00DWs/" target="_blank" rel="noreferrer noopener">Click here</a> to see Laurie’s first ever session a few months ago!
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