Donal Murphy and his family’s lives revolve around monitoring his three-year-old daughter due to her rare condition.
Young Vivien suffers from ketotic hypoglycemia, which affects her blood sugar levels and can cause dangerous hypoglycemic episodes.
Donal spoke to MyDerry about the struggles his family face dealing with the unknown surrounding this condition.
He said: “Vivien's life at the minute revolves around us trying to stabilise her blood sugar through food. She has to have six meals a day basically or she risks going into a hypo episode. If she is unwell she needs to wake up at night for feeding every 4 to 6 hours.
“When she has a hypo episode it can vary, she can become very floppy and unresponsive, her heart rate elevates. There is potential it could cause her to go into a coma.
“When she is well, sometimes she is asymptomatic going into these hypo episodes, which means we can never tell when the next one will happen. When she most recently went into a hypo we rang an ambulance. Even the ambulance staff had to google her condition because they aren't familiar with it."
There are ways for Donal and his family to manage Vivien’s condition. By having access to a Continuous Glucose Monitor they would get a blood sugar reading every five minutes and be alerted to a hypo episode.
Donal said: “It is a preventative measure. If Vivien was Type One Diabetic she would qualify for a CGM. She has been in hospital 13 times in less than a year and she still cannot get a CGM.
“At the minute the priority is keeping Vivien safe. The only way we can do that is constant monitoring, but having the CGM would give us peace of mind."
For Donal and his family, access to a CGM would change their lives. They want more research and funding to go towards families who are coping to control rare conditions. Until there is a way for them to manage her condition, Vivien is missing out on a lot.
Donal said: “We are incredibly worried because when her pre-school starts in September, there is no way she can be constantly monitored in a classroom, especially if she does not have a CGM at that stage. At the minute she would not qualify for a classroom assistant either to help.
“Things like going on holiday is practically impossible because we would be constantly worried about what if she took unwell mid-flight or if she needed to go to hospital in another country would they be familiar with her condition. She and her brother are missing out.
“Myself and Vivien’s mother are exhausted, we are running on empty, we don’t sleep because we are always worried about her, worried about the next hypo because we would never forgive ourselves if we slept in and missed something.”
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