Two-year-old Leo tucks hungrily into a bag of crisps. Although he is eating quickly, it is not quite quick enough for mum Kayleigh.
When he gets distracted, she chivvies him along, lifting the little hand holding the crisp to his mouth: “Come on Leo, eat up”
For Leo has just 15 minutes in which to finish – and in two hours he will need another snack – and then another and another. Put simply, if Leo is not fed every two hours he can become hypoglycemic and run the risk of seizures, coma or even death.
Kayleigh and Ben are constantly clock-watching in this minute-by-minute existence and cannot afford to miss or be late for feeds.
Leo has Glycogen Storage Disease, an extremely rare inherited metabolic disorder. Around half the glucose from the food we eat is stored by the body for release later. This stored glucose is called Glycogen. Children with Leo’s condition cannot convert their stores of glycogen back to use as ‘fuel’ when they need to - so it is like permanently running on an empty tank.
To further complicate matters Leo’s diet has to be strictly controlled. He can only eat 10g of carbs at a time – that’s the equivalent of one digestive biscuit, so food portions have to be strictly controlled. The 15 minute eating time rule is to give Leo’s body the chance to digest the food and then be hungry enough to eat again an hour and 45 minutes later. Leo cannot tolerate more than two hours of fasting.
It is a gruelling routine for mum and dad and one that became doubled with the arrival of baby brother Elliott, 7 months, who also suffers from the same rare condition.
“Elliott was diagnosed at two-weeks-old but for Leo it was 14 months before anyone realised what was wrong. By then he was so poorly, he had a huge stomach because his liver had become enlarged and he was sleeping 19 hours a day.
“He is traumatised by food because when he was a baby no matter what he ate, his body was constantly telling his brain that his stomach was empty. He was weak and lifeless all the time.” At night the brothers are put on a pump feed which automatically goes into their sleeping bodies via an NG tube – a feeding tube through the nose. But even then there’s still an anxiety that the tube could get tangled up and stop functioning or worse, become wrapped round Leo or Elliott’s neck.
During the day the two hourly food cycle means both mum and dad are both tied up feeding the boys simultaneously. Not to mention all the other medical procedures that come with the territory.
“Ben deals with tubes because I am too squeamish and I do the blood and needles bit,” said Kayleigh.
The family also has to travel up to London every three months to see specialists which is exhausting, expensive and also impacts on the couple’s other child, daughter Chelsea, seven.
“Ben had to give up his job once Elliott was born as we realised I would no longer be able to cope alone. It was really hard on him having to adapt to a new life of housework and caring round the clock.
“Our relationship became really difficult. The dynamic changed as we went from being a couple to parents to nurses. We were stuck at home together all the time getting under each other’s feet. It became so stressful.
When the community nurse told them about Julia’s House, Ben and Kayleigh’s first reaction was a typical one: “We thought oh no, we don’t need that – a hospice! But we decided to have a look around anyway and we absolutely loved it. It was literally a house full of toys and fun, just like a proper family home.”
“We choose to have our care sessions at the hospice because it is such a lovely social setting for Leo and Elliott. Chelsea has started siblings and absolutely loved the Sibling Ball.
“For the first time in years we went out to the cinema, had something to eat together and went bowling. It was so fantastic to have that chance to do things, just the two, us free from all the worry that goes with the boys.
“I am normally always conscious of time because of the feeding routine. To go out and not even have to glance at the clock, to not have to think: ‘Are they Ok? Do they need feeding? Are they showing any symptoms of anything? is amazingly liberating.
“Our own family feel too nervous to take responsibility for the boys – and we would probably fret too much anyway. Having experienced nurses and carers doing the sits gives us the confidence to enjoy our freedom, knowing nothing is going to happen that they can’t handle.
“Julia’s House has made an unbelievable difference in how we are able to cope. Those breaks mean so much to us.”
"The only support we have is from Julia's House - and our lives have been transformed by it"