Funding for diabetic girls Dexcom G6

Type 1 diabetic child needing your help.

In their infinite wisdom, the government have decided to take away the funding for my daughter's dexcom G6.

When my baby girl was just 4 years old, she was diagnosed with Type 1 diabetes. Since then, her life has been a struggle. Every day tasks, that we all take for granted, can potentially be a risk to her. For a now 10 year old girl, that's hard enough.

In 2018, in the early hours of the morning, I woke up to screams coming from Lola's room. She was lying on the floor, one arm rigid straight above her head, the other bent at the elbow with her hand at her face. She was still screaming when I entered her room. She was stiff as a board, her eyes open, glazed and fixed. I crouched beside her, speaking as calm as I could, calling her name, trying to stop her from screaming. I checked her blood glucose levels, she was at 3.4 which although low, was nothing too major, she had been lower before and been absolutely fine. After a few minutes of the screaming, now the whole house was awake, she suddenly stopped and her body went completely limp. She had wet herself also. I scooped her up into my lap, trying to get glucose (fast acting carbohydrates) into her, but she could not swallow. Her eyes were open, but she was not blinking, she could not speak and she could not move or hold herself up. After working her glucose into her cheeks and rubbing it on her gums for about an hour, he blood glucose levels up to a now healthy level, she started to respond to her brothers voice. She was looking at him and attempting to laugh, while he held her hand and told her little jokes to try to get her to communicate. Another hour and she said his name. Then she started to vomit. The vomit came every 15 minutes for about 2 hours. In between, she tried to sleep. Waking to vomit, then falling back to sleep. After cleaning her up, and managing to stop the vomit, she slept for about 24 hours, waking only when I woke her to have a drink, something small to eat to maintain her blood glucose levels. 

It broke me seeing my daughter like this and feeling so useless. 

I told her diabetes team about it, chalking it up to low blood glucose levels. Her team had not heard of anything like this before. 

Almost a year passed until she had another "episode" , exactly as before. This time, I called an ambulance. She was taken into hospital, but they were unsure of what had happened to her. Same symptoms as before, screaming, stiffness, low blood glucose, unable to stand/talk/support her own head. Then came the vomiting, the intense and very painful head ache. All as it was before. I spoke with her team again, they still didn't know what it was. 

2 weeks later, another episode hit. This time, I recorded it, start to finish to actually show her team and her GP. Epilepsy was mentioned. My heart sank. Not another thing for her to deal with. For the love of God, why her? She has enough to deal with. 

The episodes came every month or so, while heart breaking to watch, I knew what I was doing now. Seizure, non verbal for about 3 hours, vomiting, headache, sleep. 

In march this year, just as the first lockdown started, her diabetes team at Queen Elizabeth hospital, Woolwich gave Lola a new constant glucose monitor. It sent updates ever 5 minutes to my phone day and night, so I was able to catch a low blood glucose before the seizure hit. It worked! For 6 months she was seizure free. Then the funding was taken away. It's still unclear why, other than the government didn't deem it a necessity for Lola. It is. As soon as the last constant glucose monitor run out, the seizures started again. 

I have been looking into how much it would cost to pay for this device myself. It averages about £300 a month, which is a 3rd of my wages a month. It's just something I can't afford. No way. They've taken away the quality of life that my daughter deserves. She is anxious every night before bedtime, in case she has a seizure. On top of doing 7-10 injections a day for her diabetes. Image, 7-10 needles a day. Every day. No matter how you're feeling. Not to mention the constant finger pricks.

I was advised by some strangers on a group I follow on Facebook to ask for your help. The amount I've asked for is for a years supply of the dexcom G6 (constant glucose monitor).  So here I am, pride out of the window, asking strangers to give my daughter her quality of life back. To allow her to be a child again. To allow her to be somewhat normal. To sleep at night without the fear of having a seizure. To enjoy Christmas this year, even after the awful year we have all suffered. 

I ask that you share my story far and wide. Put the government to shame for removing something so life changing, from a 10 year old little girl. My little girl. 

Thank you for taking the time to read this. I really do appreciate it. 

Yours

Laura xx

Ps.
To all those who donated before I adjusted the amount (and found a cheaper way of funding it) if you would like a refund, please let me know. At no point was it my intention to mislead or seek an amount that was not needed. I apologize if that is how it seemed and I will not be offended in any way if you would like to take me up on my offer. You are and will still be held in high regard. Xx