The family of a child with a rare genetic condition has described how a light projector has given their little girl peace and calm at night.
Nora Hart, from Ballynahinch, has epileptic encephalopathy caused by a genetic mutation – SCN8A – and a rare and severe type of epilepsy known as Lennox Gastaut Syndrome. Her complex condition means the four-year-old has frequent seizures, as well as mobility, respiratory and feeding issues, meaning she needs round the clock care.
Speaking to Belfast Live, Nora's mum Grace says they had no idea that their little girl would become so unwell until she was a couple of months old.
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"Nora was born and developed regularly for the first number of weeks," Grace said.
"At about four months old, we noticed that Nora had stopped smiling and looking. Her eyes started to roll into her head quite a lot and she'd become very agitated.
"We took her to hospital and she started to have seizures. They originally diagnosed Nora with infantile spasms, which is a form of seizure which can be caused by lots of different things. Nora would have seized quite uncontrollably.
"With a mixture of medication and steroids, they finally got control of them and then she came home and two weeks later they started, and they have never stopped. Nora spent a very long time in hospital at that point, trying to get some form of control. At one point we were told she wouldn’t see another Christmas, which was absolutely heart-breaking for us. Thankfully, Nora is a little fighter.
"She was having maybe 30 to 40 seizures a day. She needs to be tube fed then because she stopped swallowing properly. The seizures have affected every part of Nora's development. She is almost like a newborn baby where she can't control her head or her limbs.
"We have to do everything for her and in all honestly the seizures just ravaged her body. Despite this all, Nora is just so sweet and so beautiful. She would break your heart because she tries so hard and fights every single day even for just a little smile, she tries and we are so proud of her."
Due to her needs Nora attends the Children’s Hospice in Belfast for respite care, where her family and staff noticed the impact of sensory equipment on Nora.
While her seizures are more under control these days, one of the things her family has struggled with is sleep. Nora sleeps in her parents' room and can be very unsettled, so a good night's sleep for her mum and dad is rare, which brings more challenges as they have Nora’s brother and sister to look after too.
The seizures have also affected Nora’s eyesight, leaving her with cortical visual impairment (CVI), a disorder caused by damage to the parts of the brain that process vision.
Nora's family reached out to Children Today Charitable Trust for help with funding the sensory equipment after seeing the impact it had on Nora. She now has a special light projector which brings her comfort and peace.
"The light projector has really helped to soothe her at night time. It gives her both comfort and stimulus, and us peace of mind as parents," Grace added.
"We’re told the projector could also help to improve Nora’s sight as it provides visual stimulation. It’s so nice to have something at home that she can enjoy any time. It really has made a huge difference to Nora and us as a family. I know it might seem like a small thing, but actually it’s a really big thing for Nora."
Emma Prescott, charity director at Children Today, said: "As any parent knows you can’t underestimate the value of a good night’s sleep and peace and calm in the home. So, we’re pleased to hear that Nora’s light projector is having the desired effect and helping to soothe her as well as provide vital stimulation."
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