Nicola’s Story

Twin boys Lucas and Aiden were developing normally and had started talking, feeding themselves and almost walking until around 18 months old when they both started to have daily seizures. The boys started to lose the skills they had developed and quickly regressed to be like newborn babies.

Their Mum, Nicola, explained, “The boys were fine until around nine months old, they’d had febrile seizures but only when they were unwell. At around 18 months though they both started to have seizures daily and they lost everything they could once do. It was heart-breaking to see. We were advised to quickly do genetic tests and the terrible news came back that they both had a very rare genetic condition called NRROS.”

The boys’ condition was so rare that it was only discovered in 2020 and only 13 cases have been diagnosed worldwide. The family were referred to Dougie Mac’s children’s services.

“We got referred to Dougie Mac when we were in hospital with Lucas who was struggling quite badly with his breathing. A member of the children’s care team came to see us and have a chat about the end of life care the hospice could offer.

“As a family we were quite nervous to visit the hospice but when we went for a day visit it was nothing like we’d thought it would be. The staff were absolutely amazing and brilliant with Lucas and Aiden, it was very relaxed and instantly made us feel comfortable and at home.”

Lucas and Aiden were just two years old when they passed away, just six weeks apart, at Dougie Mac’s children’s services.

“The care and support we received from everyone at Dougie Mac was amazing, out of this world, all the staff members went above and beyond. The hospice is very homely and made us feel so relaxed, and it will always be a very, very special place to us as a family. What they do for families like ours is just amazing.

“Our eldest child, Josie, is still being supported by the hospice and meets with one of the counsellors every week. He does an amazing job with her, she looks forward to her sessions and always comes out smiling. She’ll also be joining the siblings club soon.”