In June, Louise Hughes spoke publicly about her daughter Dani Rose’s battle with Type 1 Diabetes. Four year- old Dani Rose was diagnosed with the condition last year and life was turned upside down for Louise, her partner Ramon and their little girl.
Louise, who was diagnosed with gestational diabetes when she was pregnant with Dani Rose, was managing her own condition, but like most parents found it heartbreaking to watch her little girl have to deal with a daily dose of injections and blood tests. As well as this, Dani Rose’s eating habits have had to be managed in the most precise detail. For the past year, her food has been carboyhdrate counted. Her parents have had to look at the carboydrates, divide them by 100 grams and multiply that by the desired weight. It’s vital that she eats every two hours and has her blood tested every two hours. Without this routine Dani Rose could suffer a ‘hypo’ which is triggered by low blood glucose levels.
For her parents, to say the it’s been a steep learning curve would be an understatement. Almost like medical professionals, they’ve had to digest huge amounts of jargon and turn their lifestyle around to make sure their daughter’s vital routine is implemented.
Over the past year, Louise could only dream of the difference a special insulin pump would make to her little girl’s life. With a lengthy NHS waiting list for the special technology, which costs around £3,000, it never seemed like a realistic possibility for the local family.
However, last month, thanks to funding being released, the family were told by the Western Trust that Dani Rose would get her pump.
“We were in complete shock,” says Louise as she spoke this week to raise awareness of World Diabetes Day on Tuesday.
“I’m sure at the time I didn’t sound very grateful but it was just so much to take in after a full year of doing injections and watching Dani Rose have to deal with all that.”
The pump, which is the same size as a mobile phone, plays the role of the pancreas and will release insulin gradually into Dani Rose’s body, maintaing it at a stable level.
“Having the pump is going to be completely life-changing for Dani Rose,” says Louise.
“The flexibility will be the major difference. Now, no matter where we are or what we’re doing, she has to eat every two hours, but with the pump that will change and she won’t have to stick to that strict routine. Instead of all those daily injections we’ll just have to change the canula for the pump every three days. If there’s a blockage with the pump, she’ll have to get an injection, but only if that happens.”
Recently, when she had a tummy bug, Dani Rose ended up in hospital because it became impossible for her parents to keep her blood sugars up. That situation will be prevented by the action of the pump. The technology of the pump will also lessen the risk of Dani Rose developing long-term health complications like kidney damage and nerve damage by controlling the haemoglobin molecule HBA1C.
In the coming weeks, Dani Rose will begin wearing the pump inside custom-made Disney Princess and Moshi Monsters pump bags. While the adults around her, including her teachers at Long Tower Primary School and her parents, will grapple with the practical aspects of using the state-of-the-art machine, Dani Rose will eventually be able to enjoy some of the most basic privileges of childhood.
“This year, for the first time ever, Dani Rose will be able to have a tiny selection box at Christmas and that’s pretty special for us,” says Louise. “We want to say a really special thanks to her teachers and classroom assistant at Longtower PS and her Diabetic Specialist team at Altnagelvin. With their help, it’s making this process a lot easier. We have a whole new routine to get used to now, but it’s one which will be so much easier on Dani Rose, and that’s the most important thing.”