Meet Sarah (and Ollie) - One of our Madison Lyden Scholarship recipients

Sarah writes:

I’m feeling incredibly thankful for The Type1 Foundation. I recently found out that I am a recipient of a Madison Lyden Scholarship. I feel so honoured and I am so incredibly grateful. I actually can’t quite believe it

I was diagnosed with t1d 32 years ago when I was 4 years old. Things are much different these days with all of the technology available, which is so promising especially for future generations. When I was a child it was finger pricks at main meals and no real clue of what was happening in between times. Insulin was drawn up in a syringe (not the small ones that are available today either). As a guesstimate, I would’ve had around 48,000 injections before I started on an insulin pump. To date I’d be up to approximately 93,000 finger pricks.

Growing up, there were no other children with Type 1 when I was at primary school & I didn’t know any other Type 1’s. We lived over the back fence of the primary school I attended. My mum was a phone call away if the school were unsure or if I had a hypo. Every lunch break Mum would come to the school to do my finger prick and give my insulin, the school did not help to manage it back then. Mum came on every school camp and school excursion. I think people were scared of the unknown, I didn’t get many invites to sleepovers. The awareness and understanding has come a long way in my 30 years, but I think it still has a long way to go.

Having lived with Type 1 for as long as I can remember, I don’t know life to be any different. It hasn’t come without it’s challenges. It’s had quite an impact on my mental health. It’s a full time job, a moving target requiring constant management and of course one with no days off. At the same time, I like to think it hasn’t held me back though - I’ve studied, I’ve travelled, I’m a wife, mother & business owner.

I am a mum of 2 boys aged 4 and 6. My pregnancies were both fairly challenging but I was fortunate to have access to CGM for both pregnancies which made it a little easier and I know from this experience just how life changing CGM is.

2 years ago on my 34th birthday, our then 2 year old son Ollie was also diagnosed with Type 1. This was certainly a birthday to remember but one I would rather forget. It broke my heart. We were quite fortunate though as I was aware of the warning signs so we were on to the symptoms early and he didn’t become severely unwell like I know many others have.

In the lead up to his diagnosis, Ollie’s behaviour had become very unpredictable, he was extremely irritable. He was filling and wetting through nappies in a very short period of time. He was drinking an excessive amount for such a little guy. Looking back, he was so miserable and out of sorts. He must have felt awful. It was December and we were going to see Santa. In line waiting, Ollie finished his drink bottle of water. He then took his older brothers drink bottle and finished that too. He was incredibly out of sorts that day. On the way home, I remember having a drink from my drink bottle and he screamed at me for the bottle and proceeded to finish the contents of my water bottle. At this point I knew that something wasn’t right but at the same time I think I was in complete denial. It wasn’t until I was talking to my sister about it when she said, ‘why don’t you finger prick him?’

Of course!

Why hadn’t I thought of this?

I’m sure I had but I I was in such a state of denial that it hadn’t even registered and I don’t think I was thinking rationally. We decided to do a fasting BGL the next morning.

The following morning our 2 little boys wished me a happy birthday and soon after that Ollie had his first finger prick. His fasting BGL was 8.9. I thought to myself that’s a bit high. Deep down I was thinking and hoping that maybe its not too high though I contacted one of my diabetes team and she advised that if we had any concerns to go straight to emergency… so we did and hours later his diagnosis followed.

Thankfully, Ollie did not become severely unwell at diagnosis. His BGL was 46.8 however he was not in DKA. It was actually a struggle in ED to be seen. They were quite dismissive because although his BGL was HIGH he did not present as unwell (not lethargic etc) but he was extremely & very abnormally hyperactive.

We spent a week in hospital but made it home before Christmas. It wasn’t an easy time and to this day we are dealing with the impact of his experienced medical trauma on his emotional development. At 2 and a half years old Ollie was aware of what was going on but not able to understand why amongst others things, he was a pin cushion and why everyone kept hurting him. He developed quite a resistance to his 5-6 injections a day and the many more finger pricks. Through private health we received an insulin pump quite quickly which alleviated some of the resistance and angst of the injections. We still do most of his set changes and sensor insertions while he sleeps to reduce the anxiety around needles.

Having a child with type 1 has been a whole new ball game compared to managing my own. As his parents, it felt like a huge loss. We grieve for the life he would have had without diabetes. Knowing and living with Type 1 , I particularly grieve for his freedom. For the carefree days of being a kid. Sometimes it’s just the small things, like arriving at the beach and running into the ocean spontaneously as a 3 year old without having to interrupt this and remove his insulin pump. I know that Ollie can do pretty much anything that people without diabetes can do but I also know it comes with added lifelong planning and management.

It is what it is and we just keep on riding the Type 1 roller coaster.

Naturally as a mother, I put Ollie first and worry about his needs first and foremost. This is why I am so grateful to receive a Madison Lyden scholarship as it will allow me to gain better control of my own blood sugar levels and for that, I really can’t thank Ange & the The Type1 Foundation enough.