Published on 21 July 2023

Funky Pumpers founder Debbie Jones on when her son AJ was diagnosed with type 1 diabetes.

My son Adam (known as AJ) was diagnosed with type 1 diabetes on 23rd May 2005. Our diagnosis “story” is sadly very similar to the one told by many parents, in that all the classic symptoms of having type 1 diabetes were missed numerous times by our GP.

AJ had been feeling very unwell. My husband and I had separated the year before, and between us we took AJ to the doctor four times in a 10-day period, as we both knew something was very wrong.

Thirsty and tired

AJ was incredibly thirsty. I remember buying three litres of diet cola and he drank them all in one evening. I actually told him off for doing that, as they were supposed to last a full week. He just could not quench his thirst. I still feel incredibly guilty to this day for reprimanding him about drinking all the diet cola.

 AJ was also incredibly tired. He was literally so tired that his brother would be asking him to go on the trampoline in the garden and AJ would walk out there but not have the energy to even get on the trampoline. He would come straight back in to lie down with exhaustion. AJ was going to the toilet constantly, but this was put down to all the drink he was consuming. He was also noticeably losing weight.

Kevin (AJ’s father) took AJ to the doctor for the fourth time on Friday, 20th May.

The doctor sent AJ away for full bloods at the local hospital, telling Kev to wait a few days for the results. Kev’s family lived in North Wales and Kev had arranged to visit them that weekend, so after the blood tests he drove to see his family with AJ asleep in the car.

A doctor’s receptionist phoned the home phone late on the Friday; our other son, who at the time was 18, answered. She asked to speak to Kev, but was told he was away for the weekend, so the message left was: “When he gets back ask him to phone us”.

Over the weekend Kev phoned me and said AJ had got much worse, that he just wasn’t staying awake and was sleeping the whole time.

Kev cut his trip short and came back on the Sunday. By Monday morning we decided that we needed to get AJ to hospital. As Kev was leaving the house at about 7.30am the GP phoned, he sounded really worried, he asked why AJ wasn’t in hospital? Kev said he was on his way there now. Apparently, the receptionist should have told our other son that the bloods showed AJ needed to get to hospital and they were waiting for him, but that wasn’t the message she relayed.

On arrival at the hospital AJ was put straight onto a drip and very closely monitored. He was in severe diabetic ketoacidosis and all his internal organs were struggling to cope and had started to shut down. It was a very traumatic time.

As parents, the actual “diagnosis” is hard to comprehend, although for us it was a double-edged sword.

We felt “relief” to finally have a diagnosis, which sounds bizarre, but we knew AJ was really ill and finally we had been “listened to” and not fobbed off with: “It’s just a nasty virus”. To get a diagnosis at least meant AJ could get treatment, but then the diagnosis carried its own horror story of being a lifelong chronic condition with life-changing implications of constant testing of blood glucose levels, monitoring foods for the carbohydrate, protein and fat content and continuous insulin dose calculations.

A type 1 diabetes diagnosis in the family affects the whole family. It is obviously a huge shock to the child, but it is also a huge shock to the parents, siblings, grandparents and the wider extended family and friendship groups.

If a child is going to manage their type 1 diabetes well, then they need an amazing support network to understand and aid them. AJ is lucky; our family have always been close and everyone has continued over the years to not only be interested in AJ’s type 1 diabetes, but to genuinely care and show him support.

A woman using an insulin pump.

Insulin pumps

There have been numerous challenges along the way. AJ’s original hospital were not very “tech friendly”, mainly due to the funding available from the then Primary Care Trust (subsequently changed to clinical commissioning groups (CCGs) and now integrated care systems (ICSs)). I literally felt I was fighting them for six years.

Finally, on 7th September 2011 AJ was given his first insulin pump. Nothing is straightforward though, as when funding was finally approved we then found out that our team were not very knowledgeable on the day-to-day use of the technology.

So, we made the decision to change to a central London hospital. This was one of the best decisions we made. The new team told us that the advice we had been following from the old team was at least 10 years out of date, and we went “back to basics” with AJ’s care. It was a total eye-opener, and completely life-changing for AJ.

Funky Pumpers At DWDS South 2022

Supporting people living with type 1 diabetes

One month after AJ received his insulin pump, I set up a company with my business partner offering fun insulin pump cases. The cases supplied by the NHS were bulky and boring.

My view was that if AJ is going to wear this tech all day every day, at least let him have something that was comfy and fashionable. I knew that if we were struggling to find suitable insulin pump accessories, that so were thousands of other children and adults with type 1 diabetes.

The company was originally called Pump Fashion Ltd, but later merged with Funky Pumpers and now trades as Funky Pumpers. Our product range has significantly grown over the years. We literally offer thousands of products, which range from the fun products that we started out with to the everyday essential products that are necessary.

Our product range is inspired by our customers. We love it when people ask us to stock something that we don’t yet carry, and we manage to source it and offer it online. We buy British and support local businesses when we can, but we also stock products from all over the world, as we recognise that our customers want a full range of options, and don’t want to have to wait two to three weeks for international deliveries or worry about additional import costs.

Although Funky Pumpers is an online company, we attend as many events as we can each year. At these events we set up a stand and showcase and sell our range of products. We also share stories with other parents and people affected by type 1 diabetes. Honestly, if you haven’t been to one of these events, I strongly urge you to go.

Knowledge is power

My mantra is “knowledge is power” and this is crucial when it comes to managing diabetes. By mixing with other people in the same situation as you, by being able to listen to different presentations about managing your diabetes during sport, or by learning more about carbohydrate counting and the effects of fats and proteins or by discussing the emotional burnout with professionals, you will leave the event feeling empowered.

The more you learn, and the more different presentations you attend, the more confident you will become. You will also find out about the latest technology, and this is crucial so that you can advocate for yourself or your child in the future.

People talking with each other using hand gestures

Talking to others

Crucially, you will know you are not alone. Talking to others who share what we have gone through and are going through is the best tonic. I am very liberal with my hugs and will happily hug and chat for as long as someone will reciprocate. At lots of events I get talking to families to find out that they have not spoken to anyone in the same position as them previously. Once you get involved with the type 1 diabetes community you will find that although obviously it is not a “club” that you ever wanted to be in – but as you have to be part of it you will see that it is an amazing group of supportive and welcoming people.

I did not want to end without going on to say how AJ is doing now, as I started with the horrors of diagnosis. AJ is now 31 years old. He has been through university and has a Bachelor of Arts degree in music management and studio production. I’m not going to lie, I cried my eyes out when he went to university (and full disclosure – so did his father!), just at the thought of him leaving home!

However, he house-shared with amazing friends, they fully supported him and fully embraced his type 1 diabetes, so AJ had a fantastic time at university. He now works in house and garden maintenance (manual work carries challenges with blood glucose levels, but again he is really supported at work). He likes to travel and he loves snowboarding.

So please, if you take anything from this, please use my “knowledge is power” mantra, learn as much as you can about your condition and try and go to some events.

DRWF is one of the amazing charities we support. They offer events all over the country, we attend as many of these as we can, the staff are just so lovely and welcoming, and if you do attend, please come and say hi. Hugs are optional!

Funky Pumpers will be among the exhibitors attending the DRWF United Through Diabetes wellness day on Saturday, 16th September.
For more information and booking visit here
For more information about DRWF-funded research visit here
Article originally published in the Summer 2023 edition of Diabetes Wellness News. For more information and to subscribe visit here

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