Jasmin was born eight weeks premature but all was ok with her until she was five months old when she began to have seizures. One day in May, Jasmin had a seizure but this time it was different, she was lifeless and we didn’t know what to do, so we dialled 999 and hoped they could help our daughter.
We were taken to our local in hospital in York where they began to run tests including for diabetes which came back negative. Jasmin continued to have really bad seizures and then we were told she might have Hyperinsulinism - a condition that causes individuals to have abnormally high levels of insulin so we would need to be transferred to the specialist centre in Manchester for this condition.
On the 9th June 2016 we were transferred to Royal Manchester Children’s Hospital to the endocrine team. The team at the hospital began to run tests but Jasmin’s seizures continued and I really thought we were going to lose her, especially as during two of the seizures Jasmin stopped breathing and the medical team had to bring her back round. It became clear that Jasmin didn’t have an insulin problem and didn’t have Hyperinsulinism,
Jasmin was then seen by the metabolic team and Dr Jones mentioned a condition I’d never heard of called Glycogen Storage Disease (GSD) which is a deficiency of enzymes responsible for forming or releasing glycogen and told us Jasmin would need to undergo genetic testing and it could take five to six weeks until they were able to confirm if that is what Jasmin had.
We just had to wait – the hospital were great and put a plan in place to start treating her immediately for GSD but sitting in the same room day in day out, waiting for the news and knowing that you can’t take your daughter off the ward because she is too unstable is hard to deal with.
After a few weeks, we were given the news that Jasmin had the rare condition called GSD Type 3 which means that she has a build-up of glycogen in her cells and that it may affect the function of her liver and muscles. Jasmin can also suffer low blood sugar and she has an enlarged liver.
Jasmin spent another five weeks in hospital and luckily we were able to take her off Ward 85 and into a multi-sensory playroom on another ward. This was great for Jasmin and we were worried her development was getting behind. But thanks to the help of the play team and the multi-sensory room Jasmin started to try and roll over and she even sat up unaided! It was only for a few seconds but it was wonderful to see. They say you need a break away, but we also needed a break away as a family. We needed that time together as a family. It just gave us an opportunity to just have some fun.
Jasmin’s condition is controlled by feeds, when she’s well she can go five hours in between feeds but when she is really poorly we have to feed her every two hours. We have to regularly check her blood sugars and she has been on special milk.
Ward 85 saved our daughters life but in that first four weeks it would have been great if they’d had their own multi-sensory room, as knowing that your sick child has a place to go that will let them have fun and you can see them laughing and smiling and for a while you can forget about the illness – well that is priceless.
Jasmin is currently doing really well but I think we’re going to have a couple of tricky years with her up until her immune system is built up. This may mean hospital stays and if it does it would be great to know there is a space for Jasmin to use when she is too poorly to leave the ward.