Tyler's Story

“If we didn’t have Hannah I feel like things wouldn’t get done and there would be more hospital admissions. It would be so stressful to go back to how it was before, so worrying, I’m very anxious when it comes to Tyler. He has a life-limiting condition, we don’t know how long we’ve got, and the time I had to spend calling people could be time spent with Tyler.”

Marvel fan Tyler is a happy boy who loves listening to music and spending time with his family. He particularly loves having a cuddle with his mum.   Tyler has an undiagnosed genetic condition, possibly caused by a gene mutation. While his condition is still being investigated, it is likely that his parents will never find out exactly what is wrong with him. Tyler’s symptoms include epilepsy, scoliosis, and global development delay; he is registered blind and has problems with his breathing. He also has a gastrostomy for all his feeds and medication.   Karen, Tyler’s mum, explains, “When he was seven weeks old Tyler had a seizure out of nowhere. I knew it was a seizure straight away, it was the classic kind of shaking and we called an ambulance. That one seizure unleashed lots of seizures and it was quite clearly something serious.”   Karen continues, “Tyler has undergone so many tests, biopsies, and blood tests, but we still don’t have an exact cause. He’s fully dependent on adults for all aspects of his care, he can’t really do anything for himself. He has seizures daily and the problems with his airways are because of him getting older and having poor muscle tone, which gives him a floppy airway, so we have a CPAP machine for overnight and lots of suction every day.”  Karen says, “I adore this boy so much, he’s been through so much. We’re big Marvel fans and he is my superhero. No superhero could be as brave and courageous as Tyler.” Due to his various symptoms, Tyler is under the care of consultants at three different hospitals, although he has had to visit additional hospitals for treatment on occasion.  His day-to-day care can put pressure on his family, “Lots of things need doing through the day, you know, suctioning, nebuliser, if he has a seizure we have his rescue, so it’s quite full-on, quite challenging. We could plan a day out or a holiday, but then, just like that the plans could be cancelled because he’s poorly, so we’re very much at home. It’s difficult because Tyler is so reliant on me, I’m tired all the time and we can’t do the everyday things that everyone else can do.”

Meeting their Roald Dahl Nurse Hannah

The family met their Roald Dahl Nurse Hannah around a year ago, as part of Tyler’s transition to adult healthcare services. Karen commented, “I met Hannah at an appointment just as Tyler turned 18. She gave me her details and I started to contact her, more for support around his epilepsy. Tyler’s having a bad time with his seizures and it’s always so difficult to speak to the neurologist and consultant. I can go to Hannah, and she can then go to everybody else and talk to them, making my life a bit less stressful.”

Support from their Roald Dahl Nurse

Karen continues, “Every time I ring her, she never minds, she’s so supportive and reassuring. If the seizures are bad, she can talk to the doctor about medication. When Tyler hadn’t had bloods done for a while, she organised it for me, she also got in touch with the disability nurse. She just makes everything so much easier and I’ve never had that, it’s always been a lot of chasing for Tyler. It’s just so lovely that somebody arranged all of that for me. I’ve met a lot of doctors and a lot of new nurses and Hannah has been the most helpful. She’s so easy to talk to, she’s incredible, she’ll take the time and will always come back to me.” Karen also believes that Hannah’s involvement has reduced the number of hospital admissions needed for Tyler, “When Hannah organised his bloods it came back that his iron and folate were low, which would certainly have been an admission. Now I can get hold of someone and talk to someone it’s eliminating that need to go into hospital, as we’re getting things early.“ Hannah’s involvement has also been a big help for Karen emotionally, she says, “There’s been times I’ve got a bit emotional on the phone because it all gets too much sometimes. I never know what’s going to happen with Ty and some days I feel like I’m drowning. There’s not that much support out there for parents, it’s all for the children, and we’re experiencing it every day and it can be a lot. Hannah has been so compassionate and supportive and that’s a really big thing because not everyone’s approachable or takes the time to listen.” The help and support that Hannah provides for Karen, Tyler, and other families is only possible thanks to the generous support of the charity’s donors. Karen says, “If we didn’t have Hannah I feel like things wouldn’t get done and there would be more hospital admissions. It would be so stressful to go back to how it was before, so worrying, I’m very anxious when it comes to Tyler. He has a life-limiting condition, we don’t know how long we’ve got, and the time I had to spend calling people could be time spent with Tyler.”  Commenting on the charity, Karen noted, “It makes such a big impact on our lives. The support we’ve had from Hannah is just incredible, she’s invaluable and it helps us as a family more than I can even put into words.”