Speaking ahead of Undiagnosed Children’s Awareness Day (30 April), Laura Rutherford, who lives in Bonnybridge, says not having a ‘label’ for Brody bothers her less than it used to.
She said: “We are ten years in to parenting Brody and it has been a rollercoaster. We have some diagnoses (epilepsy, autism, hypermobility) and a possible future rare diagnosis that’s currently sat on a researcher’s desk in Paris.
“I look back and think of all that we – all that he – has been through and I can honestly say that we’ve been up, down and spun around. The highest of highs and the lowest of lows.”
One constant in their lives has been the care they’ve received at the Royal Hospital for Children in Glasgow. Brody first came to Glasgow for care when he was around two years old, firstly to Yorkhill and now the RHC.
Laura said: “What’s great about the RHC is that it has all the experts under one roof. Brody currently has three specialists; one for his epilepsy, one for orthopaedics and the other is a geneticist. Over the years he’s had an operation, MRI scans, input from orthotics for his mobility, EEGs for his epilepsy and much more.
“I love the Glasgow Hospital. What’s so fantastic about the place is they are used to dealing with children and children with disabilities in particular. Not only are there these great doctors but all the other supports such as specialist equipment and things to keep the children occupied. If we arrive early for an appointment it’s never a problem and there’s a play specialist there to keep Brody entertained. He gets really excited when he knows we’re going to the RHC.
“We’re lucky, he’s healthy and his epilepsy is under control; he’s very well cared for.”
Laura has been fighting for Brody since day one. In 2016 she started a Change petition, asking all UK supermarkets to sell or manufacture bigger nappies for children with disabilities. Shortly after starting the petition, Tesco got in touch and several years were spent developing Tesco Junior Nappies, which were launched in late 2018. It's a product that Laura is really proud to have played a part in developing.
Laura also works for the charity PAMIS (Promoting a More Inclusive Society) on the Changing Places toilet campaign, which she is very passionate about.
Laura clings on to the hope that one day they will get a diagnosis for Brody. The family has been told that they have found something in his genetic make-up, which researchers have also found in half a dozen other boys around the world with similar health issues as Brody.
Laura said: “It used to matter to me more – finding the label- but less so now. We know whatever he has is very rare, so there won’t be any research on it. But genetics are developing all the time so we need to have hope.
“Yes, it is hard at times, but it is also rewarding in ways that are hard to describe. On Brody’s 10th birthday this year, when he blew out the candles on his cake for the first time, I felt like I’d won the lottery. The wins are big, no matter how small. And life is precious – we truly understand that.”
Jamie Redfern, NHSGGC’s director of woman and children said: “ “Having a child who is ill and regularly visiting hospital can be tough on a family, but when they don’t yet have a diagnosis this can be doubly difficult.
“It’s been a pleasure to care for Brody over the years and to hear the positive feedback about his treatment at the Royal Hospital for Children will serve as a real boost for our staff.”
Laura added: “What could I tell you about Brody? I could tell you that he’s strong. I could tell you that he’s happy. I could tell you that he’s perfectly imperfect. I could tell you that he’s my greatest teacher and biggest lesson. I could tell you that he’s many amazing things.
“My boy is 100 % pure, unfiltered sunshine – and I am so grateful that he is mine. We are surrounded by beauty.”
Laura has her own blog about their journey - www.brodymeandgdd.com - which can also be found on social media. To find out more about Undiagnosed Children’s Day visit SWAN (Syndromes without a Name) UK at www.undiagnosed.org.uk.