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"We want to turn our experience into a positive event"

Mum Sara tells how a Diabetes UK Type 1 event made a world of difference to her daughter Lilly's life and helped the family turn the condition into a positive experience. To raise awareness of the condition, they've organised a sponsored walk in Brighton. 

On 30 November 2016 our baby girl's life changed forever. Over a few months our beautiful daughter Lilly was (unbeknown to me) showing signs of Type 1 diabetes. I didn’t recognise the symptoms and couldn’t put my finger on what was happening to my little girl.

Lilly has always been a happy, caring, polite little girl who loved life and school. All of a sudden Lilly’s behaviour changed. She become very moody, argumentative and full of attitude. I put this change of behaviour down to the fact that we’d just found out Lilly was being bullied at school and Lilly always had 100% of my attention.  I’d just had my second baby and I was suffering from post-natal depression.

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A Diabetes UK Type 1 event made a worldof difference to Sara and Lilly (right).

Lilly started not wanting to go to school. It became extremely difficult to get her up in the mornings. She would say her tummy and head were hurting. By the time we got to school she would be running around happy. Then Lilly started randomly being sick in the mornings so I would keep her off school.

 

By 10am she would be running around the house full of energy and eating everything she could get her hands on. I took Lilly to the doctors and it was put down to a tummy bug.

I knew something wasn't right

Over the next few months’ Lilly’s behaviour became worse. Everything was an argument. She was eating constantly and sneaking food from the fridge to her room, missing a lot of school time due to upset tummy, headaches and throwing up. In the last couple of weeks before Lilly was diagnosed with Type 1 diabetes, I noticed Lilly was constantly thirsty and peeing a lot.

Three days before Lilly was taken into hospital she started sleep walking and wetting the bed. I knew something was really wrong with my little girl. I called the doctor on the Monday but couldn’t get an appointment until Wednesday. Over the next few days Lilly was extremely tired and moody, but was still eating and drinking loads. On Wednesday 30 November 2016, I took Lilly to the doctors for an appointment. I explained what had been going on to the doctor and that I knew something wasn’t right.

I brought a pee sample with me just in case Lilly might have a urine infection because she was wetting the bed and going to the toilet so much. The doctor took the sample and said he was checking for sugars as she may have diabetes. Sugars were found in her wee so we were sent to Brighton's children’s hospital. We arrived just before 10am and was seen straightaway by the nurse. She explained they needed to take some blood samples from Lilly to confirm if she was Type one diabetic.

We got taken to a private room. When the nurse came back she explained that they needed to put Lilly on a drip and that her blood levels were at 42 and that she needed insulin and she was very poorly. I remember asking the nurse "how poorly is she" as Lilly seemed ok to me as she was sitting up happy. The nurse then explained that Lilly’s sugar levels shouldn’t be higher than 13 maximum and that Lilly was at 42.

She explained Lilly hadType 1 diabetesand with her levels so high, that if we hadn’t got her to the hospital in time Lilly would have gone into DKA (diabetic coma) and she would have been fighting for her life. I burst into tears, not wanting Lilly to see me upset or worried, I went to the toilet which was in her room, shut the door and cried. I cried because my baby was poorly. For months she had been poorly, she had been feeling so rubbish and I had told her off so many times for drinking all the juice, for constantly eating, for her bad behaviour and for not getting up for school.

Could I have prevented this?

The guilt rushed over me. Is this my fault? I should have spotted it earlier, given her more attention and spent more time with her. Had I given her too many treats? Could I have prevented this? All these question were going round in my head.

Lilly was admitted to the children’s ward and a diabetes specialist came to see us. She explained to Lilly that she had diabetes that no one had caused this and it couldn’t have been prevented. Her pancreas had just stopped working but they were going to make her feel better. Lilly was told her body needed insulin and to get that it would have to be injected into her. She needed to inject any time she ate carbohydrates or sugar and at bedtime. She would also need to check her sugar levels through the day and night by pricking her finger with a needle and taking a blood reading.

If she was lower than a 4 she was in a hypo meaning she needed fast acting sugar and without this her levels would drop more and eventually pass out needing urgent medical care to prevent DKA (diabetic coma) or worse. If she was above a 13 she was in a hyper meaning her body needs insulin to bring her levels down. With this she would also need to check her ketone levels. Lilly’s ketones can’t be higher than 0.6 and if they are, we would need to go straight to hospital.

Over the next three days we had intense training on how to care for Lilly and how to manage her sugar levels. This included how to check her sugar levels, how to inject her, how to carb count so we know how much insulin to give her, how to bring her sugar levels up or down depending on her levels. Preventing her from passing out when playing with her friends, doing sports, dance etc.

Even now writing this it makes my head spin and heart break how much we had to learn to keep Lilly alive. After three days in hospital we were allowed to go home. We had been given all the information and support from the diabetes team who can only be described as amazing and have been with us every step of the way.

Hardest months I've ever faced

The next few months must have been the hardest I’d ever faced. Lilly was amazing but extremely sad and confused as to why she had this condition. She couldn’t understand why I couldn’t take it away. Lilly had been diagnosed just before Christmas and when she went to see Father Christmas and was asked what she'd like she replied “I will give up all presents, birthdays, treats etc. if you can take my diabetes away".

My heart felt like it had been broken into a million pieces. As a parent all you want for your children is to be happy and healthy. If they’re in pain or sad it’s your job to make it better, take away any pain or worries but I couldn’t take this away. I felt defeated, lost. I just want my happy little girl back.

We decided to take Lilly away to aType 1 children’s diabetes weekend in Ashford. We wanted Lilly to not feel alone. it was such an amazing weekend and pulled us all from a very sad place. Lilly loved it. It was like a little switch went on in her head; she met lots of children that are going through the same thing.

For the first time it didn’t feel like she was alone in the world with this condition. She wasn’t alone and she smiled the whole time we were there. For me it pulled me out of a very low place. Since Lilly was diagnosed I couldn’t remember the last time I had a day without crying. I was so scared all the time but after meeting other parents and them understanding the emotions, the pain, fear and anger we was going through as they were going through the same. Listening to how positive they were and gaining so much more knowledge about diabetes. For the first time since Lilly was taken to hospital I felt like I could breathe and that everything was going to be ok.

We met some incredible people who have lived with diabetes for 40 plus years. Hearing their stories and how this condition has not stopped them from accomplishing their dreams and living normal lives. We left the weekend so positive knowing no matter what was thrown at us we would get through it and we were stronger than we thought and Lilly could do anything.

Every day we learn something new about how diabetes affects Lilly and her body. When the weather is hot her sugars shoot up to the 20s meaning a lot more injections to bring her down below 13. When Lilly’s sugars drop at night while she is sleeping she sleep walks or wets the bed. Lilly won't stay at friends’ houses anymore as she feels very embarrassed. Lilly’s sugars have to be checked through the night, if she was to drop below a 4 and not sleepwalk, wet the bed or wake up pouring in sweat, her sugars would keep dropping and this could result inDKA (diabetic coma)or death.

I’m asked all the time how I sleep....... with great difficulty. When Lilly’s sugars are low she’s very down, emotional, moody and it makes her feel rubbish. When they are up she’s very argumentative, hyper and can be hard work. Lilly’s sugars affect her personality as it does for a lot of people with this condition.

Over the last few months Lilly has found it very hard to come to terms with her diabetes. We've had times where she refuses to eat so she doesn’t have to inject. She also refuses to eat when she has injected, meaning the insulin brings her down and we have to force her to eat. Nearly every day she asks me to take it away. Lilly is going to see a child counsellor so she can rant , rave and express the emotion about her condition.

Every day my heart breaks for my little girl, but she takes complete control of her diabetes, she injects herself which covers her in bruises,. checks her own levels, carb counts, knows how to bring herself up and down when needed and understands that she has to look after her body so she doesn’t become poorly. She amazes me every day, just like every child living with this, and they are all heroes.

I hope one day there will be a cure for diabetes

Awareness of this condition is so important. I believe so many parents don’t know the symptoms or understand this condition.

In the last eight months I have lost count how many times people have asked me “has Lilly got diabetes because she had too many sweets”? “Is she never allowed cake, sugar or sweets again”? “If her sugars are high can she not run up and down stairs for ten minutes”?I have heard heart-breaking stories from parents who were told to say goodbye to their babies in DKA (diabetic coma) but have come through it, but the pain and the memory of any parent to go through this hurts and makes me cry.

For now there is no cure for diabetes but I stay positive and strong, just like Lilly. I hope one day there will be a cure and we pray every day for that. For now we want to make something that makes us sad into something so positive by running charity events, letting people know how amazing , brave, inspiring and unbelievably strong these children are.

We want a positive outcome of this condition and I feel this is a why she got it - to make a difference. This condition is life threatening, but with the right care it can be managed and making people more aware of Type 1 diabetes and the symptoms we can prevent DKA (diabetic coma) or death.We are so lucky with Lilly, but so many are not and if we can make people more aware and educate them, it could save lives.

Help us raise awareness of diabetes

We have set up theChildren's Heroes Walk. We will be walking around Preston Park in Brighton on 30 September 2017 at 1pm. All children and adults involved will dress as Super Heroes. Entry will cost £5.

All children can be sponsored to do the walk and will get a certificate to take home. All children in my eyes with this condition are heroes and I believe this would be a really fun way of showing that as well as raising awareness for Type 1 diabetes.

All funds raised will go to Diabetes UK who are amazing. The money raised will help more research, giving adults and children a better quality of life with Type 1 diabetes and working towards a world without diabetes. Please come and support this event and thank you so much in advance.

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