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"I feel immensely proud of the young man he has become"

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Sara is taking on a half marathon with her son Matt who has Type 1 diabetes. Here she shares her experience of raising a child with the condition.

 


Sara's diabetes journey

  • Son, Matt, diagnosed with Type 1 diabetes aged 2
  • Learnt how to manage Matt's diabetes
  • Managing Matt's transition through school, on to adulthood
  • Supporting Diabetes UK by becoming a member and running the Bath Half marathon

Matt was diagnosed with Type 1 diabetes in February 1991. He was otherwise a happy and healthy 2-year-old up to that point.

I became concerned that something was wrong when he developed an unquenchable thirst. He would wake in the night asking for a drink, began begging me for water if I was in the kitchen and on one occasion I watched as he went round the room drinking the remains of any drink he could find, be it his sister's squash or the remains of a cold cup of tea.

Initially I convinced myself I was being a neurotic mother. But after these events happening on and off for a period of a few weeks I decided to call the doctors.

I spoke to a receptionist and voiced my concerns about his thirst and distress when asking for a drink. I was told I was worrying about nothing and toddlers often drink a lot. But I knew this was different: my older child drank a lot, but this wasn't the same.

Diagnosis

"I remember the drive down. My head was all over the place wondering what impact this would have on Matt and on the family."

I remember the drive after his diagnosis. My head was all over the place wondering what impact this would have on Matt and on the family. I knew very little, almost nothing, about diabetes.

The diagnosis was confirmed at the hospital and I remember an overload of information coming at me. We were given a room on the ward with a cot and a bed and I was told we would be there a week or so. My daughter was at home with her dad as this all happened while she was at school.

What followed that week was a crash course in diabetes management. How to inject, how to adjust insulin, what foods to eat/not eat. how to deal with hypos etc. I got home a week later and decided to take voluntary redundancy from my job. How could I hand my little boy to a childminder and expect her to manage a condition I didn't fully understand myself!

So I took a year off. I learned as much as I could about the new Matt. I grieved for my healthy little boy. I cried a lot, but never in front of him. We were lucky we didn't have to change much at home – our diet was fortunately pretty healthy, and the doctors were pleased with that.

School

Managing his transition to pre-school and primary to secondary school wasn't easy. The pre-school were great, not so the primary. The reception teacher had no interest in understanding the condition and felt he should not be in mainstream school! I was appalled by this and with the diabetes specialist nurse I had a number of meetings with the school staff prior to his start date in April 1993.

As a family we managed his diabetes very well. All my extended family took an active interest and made sure they were able to assist in his care to facilitate my return to work in June 1992. Matt's older sister, Rosie, was amazing and wanted to know all she could from a very young age. Matt took responsibility for his own injections from the age of 6 as I had encouraged him to know and understand what was required.

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Difficulties obviously arose as he grew. Each growth spurt brought on a need to change and re-balance his insulin needs. His little arm muscles suffered with the regular injections and at times he would cry which broke my heart. But we managed well; it was the only option as far as I was concerned.

School life was always challenging as each stage brought new issues. Residential trips were my nightmare but I made sure he was well equipped, staff knew sufficient to manage and I was always on the end of the phone. And I always made sure he was treated just like any other child and given all the same opportunities.

He grew into a very capable and independent young man. He graduated from university (pictured with his girlfriend), has traveled the world and he's never used the condition as a barrier. As a teenager he lost the ability to be spontaneous but with sensible planning he missed out on nothing.

Supporting Diabetes UK

I feel immensely proud of the young man he has become. He now works for Diabetes UK and is passionate about his new role with them, and it took very little persuading for me to agree to support him in running the Bath Half Marathon this year.

"Research has improved life for people like Matt over the years. But there is still so much more to learn and improve."

I have supported Diabetes UK for 25 years now and am very happy to continue to do so. Research has improved life for people like Matt over the years. But there is still so much more to learn and improve. I would dearly love to see a time when children don't have to be needle-pricked and injected numerous times a day just to be able to maintain a healthy lifestyle. The hardest part across the years has been having to hurt my child on a daily basis in order to keep him well.

Witnessing a hypo is a significantly unpleasant and often frightening experience for all those close to him. A better means of monitoring the condition that can detect early the onset of such, and in turn bring about better control, would be hugely beneficial to all affected. And in turn this would have a positive outcome long term on the cost to the NHS by reducing the complications that arise from poor control.


 

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