The song I wrote for my son with type 1 diabetes is helping JDRF
Author: Leanne's story | Posted: 26 September 2018
I want all parents to know that if their child is really thirsty and urinating a lot, they must demand a urine test. It takes the doctor a few seconds to do – but I had to wait weeks for my son to have one, when his life was in danger.
This simple test showed my son Beren, who was aged three at the time, had type 1 diabetes. This was a massive shock even though Beren’s older brother, Viggo, and his dad have a rare form of diabetes called diabetes insipidus.
People with diabetes insipidus have poor water retention because of a missing hormone. Although easily controlled with medication, it can be serious when getting an illness or having no access to water.
I started to notice Beren drinking and needing the toilet a lot more. He’d never wet the bed, but started to. This went on for weeks before I realised it was a problem. I was expecting him to have the same from of diabetes as Viggo – and so did the doctors.
I started to give him a small dose of his brother’s medicine, as the doctor agreed we should while we were waiting for a hospital appointment.
Then his drinking and weeing went out of control. Fortunately it was a student nurse that asked if any doctors had tested his urine. Going back to the doctor, he reluctantly did. He then stopped mid-sentence and said: “I’m really sorry, I’ve been so focused on your family history we hadn’t considered type 1 diabetes. Beren has glucose in his wee and you need to go to A&E immediately”.
Even after his diagnosis, I didn’t understand the complications and how difficult it would be to control – especially in a child so young.
The doctor phoned the next day to apologise, and I’m certain he won’t make the mistake of not doing a urine test again. (I was quite concerned when I found out later that he was the surgery’s diabetes specialist.)
I also found out later that it was life threatening for Beren to have been taking Viggo’s medication as this was stopping him from passing sugar out of his body, causing diabetic ketoacidosis to happen – which can lead to a coma or death if not treated in time.
My life was just getting back on track before Beren was diagnosed, as I had been through a divorce. I was a professional singer before I had children and had taken up singing soprano again with the pop choral group Shades of Blue, which was helping me to feel more like myself again.
However, two years on, I have used my experience with Beren’s diagnosis to co-write a song, Guardian Angel.
As well as being for Beren, it is to raise money for JDRF. All the money raised from the download as well as my JustGiving page will go to JDRF to fund world-class medical research into the cure, prevention and treatment of type 1 diabetes.
Guardian Angel is available for download from any online music store.