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 condition means Nora has frequent seizures, as well as mobility, respiratory and feeding issues, meaning she needs 24-hour care.
Due to her needs Nora attends the children’s hospice in Belfast for respite care, where her family and staff noticed a light projector had a peaceful, calming effect on Nora.
Her mum, Grace Pullen, says:
“Nora’s had a difficult journey. We first noticed a change in her development at about four months old. Her eyes started to roll and she stopped smiling, then she started having seizures, sometimes up to 30 a day. So, she spent a lot of time in hospital. 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.
“At first, Nora was diagnosed with infantile spasms, but genetic testing confirmed she had a genetic fault.
“The seizures are more under control these days, but one of the things we’ve really struggled with is sleep. Nora sleeps in our room and can be very unsettled, so we rarely get a good night’s sleep, which can be hard going especially as we have Nora’s brother and sister to look after as well.”
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 has very complex issues, we have to do everything for her, but she is just the sweetest little thing.
“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. 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.”