The parents of a two-year-old girl have to wake their daughter multiple times a night to check she is still alive.
Gracie Nye, was diagnosed with Type 1 diabetes in November 2018, when she was just one and has to take insulin injections and test her blood glucose levels multiple times a day.
Her parents, Gareth, 28 and Joanne Nye, 32, from Newton-le-Willows have to check their daughter's blood sugars throughout the night in case her glucose levels fall too low - which left untreated can lead to a coma.
Now, the little girl's parents are fighting for a piece of much needed diabetes technology which continuously monitors her blood sugar levels and sends alerts to Gareth and Joanne's phone.
However, Gracie's parents claim that due to a commissioning policy set out by St Helens CCG, their daughter is unable to get the monitor as she is on daily injections and not an insulin pump.
Her dad Gareth told the ECHO : "Joanne had to give up work due to the unpredictable nature of the condition, checking on Gracie numerous times a night and not knowing if she will still be alive or not.
"When Gracie goes to nursery, Joanne has to be on call in case she has a hypo [low blood sugar] and has to go up to the nursery.
"We’ve had one night out as a couple since diagnosis because of the pressures of caring for Gracie on someone else.
"Gracie currently suffers from an average four or five hypoglycaemic episodes per week."
Due to Gracie's age and being an active two-year-old, the little girl cannot treat the hypos herself and completely relies on her parents to spot the signs such as going quiet or pale, which are not always present.
Gracie's dad believes that his daughter's frequent hypos will continue and potentially worsen when Gracie starts attending school due to being in a bigger class and having less one-to-one care.
Therefore, the continuous monitor would allow Gracie's parents and carers in school to know when the two-year-old is having a hypo as they will be sent an alert to their phone.
The lecturer claims that despite being compliant, attending all the appointments and meeting the NICE guidelines for the monitor he says the St Helens CCG policy states they will "only be considered for patients…using a continuous subcutaneous insulin pump".
The family claim at no point in the NICE guidelines does it state that the provision of a continuous glucose monitor is directly related to the use of an insulin pump.
Gareth added: "Gracie shouldn't be restricted to one treatment option because we don't want an insulin pump and have to go on it in order to get the continuous glucose monitor.
"I don't think they realise how invasive the pump is, especially on an active two-year-old.
"We didn't choose the pump because she is doing fine on the injections and we didn't go on a treatment plan that wouldn't benefit her."
Gareth also said that the treatment plan of multiple injections a day was appropriate for Gracie and this was confirmed by her diabetic team at Warrington hospital - who also wanted her to have the monitor.
The family also allege the St Helens CCG's policy decision removes patient choice and actively removes treatment options.
They also state that other CCG's around the country offer patients like Gracie the technology.
A spokesperson from NHS St Helens Clinical Commissioning Group said: “We are unable to comment on individual cases for reasons of patient confidentiality, however, we have been in contact with the family and would urge them to get in touch to discuss this with us further.”
Barbara Harpham, chair of the Medical Technology Group, said: “It’s simply not fair that patients like Gracie up and down the country are being denied access to vital treatments because of where they live.
"This indiscriminate rationing by local NHS organisations must stop now and information about what treatments are or are not provided should be made freely available to patients.
"It should depend on your needs, not your postcode.”
