Mark and Diana have four children and live on the north coast of Cornwall. Their two youngest, Jake 15 and Holly 12, have type 1 diabetes and Jake also has cerebral palsy. In 2019, Jake rowed the distance of a marathon in support of Family Fund, which has made grants to help the family over the years. Diana shares the impact their health conditions have on them and on their family.

“Mark and I already had our older two when Jake was born in 2004 and the pregnancy and birth had all been fine, so there was no indication that anything would be different. But when Jake was a toddler, it became obvious that something was wrong when he started trying to walk. When a specialist said the words ‘cerebral palsy’ we hadn’t got an idea what it meant, so we obviously went home and searched for it online, and were terrified that Jake might have a condition that for some children can be life-limiting.

“Thankfully, for Jake, that wasn’t the case, and he was diagnosed with spastic diplegia, which basically means his muscle tone is too high, causing stiffness in both legs affecting his ability to walk. So, the physical impact of the condition is that he mainly needs a wheelchair to get around, although he can use a walking frame for very short distances. It’s also meant he’s several operations on his legs and ankles and a further 5 operations to correct him having a severe squint. Jake’s speech was quite delayed and he has Special Educational Needs, although he’s always attend mainstream schools and is doing really well as he approaches his GSCE year.

“It was very tough when Jake was little, he was diagnosed in the March before he turned two, so that time was a blur of physio, hospital appointments and operations, and then in the October after his birthday, I realized something else was wrong.

“Jake seemed to be always hungry, always thirsty, and he’d be sleepy in the afternoons like he’d just completely run out of steam. It was unlike anything I’d seen in his older siblings, and testing revealed he also had type 1 diabetes. It was very stressful and upsetting and he was in hospital for a week as we learnt to manage checking his bloods and giving him his insulin. I have to say he absolutely took it all in his stride was an absolute star. I remember having to do the thumb prick test check his blood sugar levels during the night, and he often wouldn’t even wake up – we were very worried but Jake has always been very calm about things.

“I was pregnant with his little sister Holly at this time, and I remember thinking – the one thing I really couldn’t cope with would be another diabetic child. Holly arrived as normal and seemed to be in good health, but then when she turned 4 – I was seeing all the same signs that Jake had shown, and after testing, it was confirmed she also had type 1 diabetes.  

“By this time Jake was already at a special needs nursery near the hospital which was great for him and helped prepare him get ready for the transition to primary school. When he moved up, I was in a group for parents with which the SENCO had organized, and one of them mentioned Family Fund.

“I work nights in my job, but by this time we made the decision that my husband Mark would stop working to provide Jake with the care he needed. Bringing up four children, two with more complicated health needs, on one salary means that money’s obviously been very tight. But our priority is their health, so for years now both of them have had an insulin pump, and every meal or snack they have you need to prick their thumb to test their blood, weigh out the carbs in the portion they’re having, then make sure they get the right amount of insulin through the pump. You also need to check their levels just before bed too. Plus for Jake there is all his personal care, especially when he was younger or after operations, and his appointments such as hydrotherapy, speech and language therapy.

“Diabetes is scary. It’s so much harder than the cerebral palsy to manage – diabetes could kill them – you’ve got to be on it all the time. Imagine they’re at a birthday party and all their friends are having cake, and you have to say – no – you can’t have it now – cos it could push your levels up so sorry – we can wrap some up for later. They’re both honestly so good – no drama. Holly can even go to sleepovers now because we’ve got her confident fitting her own cannula and checking it herself.

“At all times you’ve got to have their supply of pure glucose in the fridge, so if the worst happened and they fell into a diabetic coma you’d call an ambulance and inject them with that immediately. It’s never happened to us, and I think that’s a result of Mark and I being there almost around the clock to look after them.

“Since we heard about Family Fund, we’ve applied for family breaks, and having a contribution has just meant for us that a holiday is possible. All families need a break, but for them it’s extra important. They have so much to go through every day – with the injections and the pumping, and then for Jake it’s also the cerebral palsy – so we just want to see them relax and have fun. It’s totally for them and they really deserve it.

“We go on holiday in the UK – we tried a holiday abroad once because we wanted Holly to go to Lapland for her birthday, but it was an absolute disaster. Holly and Jake caught a sickness bug – which for diabetic children is extremely serious – and were both hospitalized.

“It was very hard when they were younger and I think when Holly was diagnosed it was the worst time. You just think – why us? But over time the support and education around diabetes we’ve had has been fantastic. It becomes normal and you just get on with it. We’re not a doom and gloom family to be honest – Jake is very funny – he just says ‘it is what it is!’

“When he set upon the idea of rowing a marathon – which is pretty incredible for anyone to do – never mind him having cerebral palsy – he didn’t think twice about which charity he wanted to support. He did amazingly well to complete it and raised over £2,000 for Family Fund. He said he wanted to help other families like ours.

“I’m proud of all our children, and of Holly and Jake in different ways. Holly manages her diabetes very independently now, and Jake has excelled in his fitness and the rowing marathon.

“At the end of the school year, he actually won The Headteacher’s Award – a special recognition of his efforts to complete the event – I’ll never forget the way the Head spoke about him, and how proud the whole school is of him. They’re going to hang a picture of the moment he rowed the final metres in the school reception to mark his achievement. You can’t really ask for more than that as a parent can you.”