A Lincolnshire family has been left waiting for answers after their toddler was diagnosed with an unknown condition impacting his growth. Lauren Key gave birth to her first son George in June 2022 at 37 weeks when scans showed he “measured a little bit small.”
Concerns were raised about his growth and now three-years-old, doctors are still unsure about George’s condition. The toddler has been given the SWAN diagnosis, a term for an undiagnosed genetic condition
Lauren, from Grantham, said, “It’s all a bit of a mystery as we just don’t know what he’s got.” George is on a database, and his family hopes that more information will be found in the future, leading to a formal diagnosis.
At the moment, they do not know his growth trajectory or how his future health may be affected. Lauren, 32, said: “He was small and a very sleepy newborn and he didn’t really change.”
The family are fundraising for life-changing treatment for George -Credit:Lauren Key
As a baby, George ‘just didn’t seem hungry’ and never woke up for a feed or finished a bottle. The family had weekly visits for the first three months of George’s life, during which time he was weighed. Despite keeping a milk diary and trialling techniques to entice him to drink, he wasn’t putting on enough weight and was sent to the hospital.
He was given an NG feeding tube in his nose, and for two weeks underwent a number of tests, from ECGs to MRIs, X-rays and ultrasounds of his kidneys, stomach and bladder. But none of the tests delivered any meaningful results.
He left the hospital two weeks later at the same weight, but soon after he started getting sick. His mum stated: “In the first two years of his life every month we’d spend a week or two in hospital because he was getting chest infections from being sick. He still wasn’t growing, he wasn’t putting on weight – he was just quite a poorly baby.”
Describing George now, Lauren said: “He’s got a smile that lights up a room. Everyone who knows him loves him.
“He’s just the most lovable special boy and I know everyone says that about their kids but there is just something about him. He is so bright, funny and cute.
“He’s super tiny – his one-year-old brother is bigger than him. We’ve done loads of genetic testing and it has not come back with anything. That doesn’t mean he doesn’t have a genetic condition, it just means they have not got a diagnosis for him.”
George began crawling for the first time last week, and Lauren shared that he has been receiving some physiotherapy from the NHS. However, this is 30 minutes a week for a five to six-week block, which he will only be able to have twice a year.
George at his home -Credit:Lauren Key
She said: “It’s just not enough for anyone.” Lauren explained that the sessions were so far apart that it was hard for George to build a connection with the professional, or when he did it would then be months before he could see them again. Lauren has been doing a lot of research and found the NAPA Centre in London, a world-renowned physical therapy clinic.
George’s parents have secured a rare cancellation slot at the site for November, which offers intensive physiotherapy proven to help children. It is hoped that this personalised therapy will help him crawl, stand and eventually walk. His mum said: “I think he will achieve so much more with the consistency of having that regular one-to-one with a person.”
Lauren explained that she feared she would have to take George abroad to another one of the centres locations due to limited availability in the UK. She said: “I looked at different countries thinking I’m going to have to take him to America or Australia as they are the only ones with spaces because the London one gets booked up so quickly because the NHS physio is just poor and kids need the private physio.
The treatment will include three hours of physio every weekday for three weeks, which could be life-changing for George. The family are hoping to fundraise £10,000 for his treatment, which will also be for food therapy.
Lauren explained that due to “his medical trauma” surrounding milk at a young age George still uses a feeding tube and associates things in his mouth with sickness. She will be taking him to a feeding clinic in Birmingham later this month where she hopes he can receive treatment from specialists in ARFID.
So far the family has raised almost half of their target on GoFundMe, and is planning some fundraising events, such as a family fun day, to help reach the goal. Lauren is hoping local businesses or individuals may want to get in touch to help with the event, and asks anyone who wants to be involved to email Laurenkey18@hotmail.co.uk.
She added that they are incredibly grateful to everyone who has already donated, and any money leftover from either treatments will be used towards George’s future healthcare needs.