'Giving our children the recognition is what’s it’s all about' - Crawley charity gets Royal seal of approval as HRH Duchess of Edinburgh visits

HRH Duchess of Edinburgh visited Super Siblings, a support group for children who have disabled brothers and sisters, and founder and CEO Sophie Smart was delighted her group was recognised in this way.

Her Royal Highness spent time with children who attended the group and spoke to children about how tough it can be having an SEN brother or sister. The Duchess showed her admiration for everyone involved in the group, which is based at Manor Green College, and took time to praise the children and parents, as well show her understanding of what home life must be like.

Sophie said: “We have known quite a few months in advance. I get quite nervous about this kind of thing but they could not have made it more comfortable. Giving our children the recognition is what’s it’s all about. Someone like the Duchess wanting to see what they are doing, it’s amazing. They needed to be recognised.

“The Duchess was really supportive and said how amazing it is and she said how she understands how needed this is.”

Sophie also beamed with pride about how the children who were there for visit engaged with the special visitor. “I could just scoop them all up,” she said. “I couldn't be more proud. It was just beautiful. Her Royal Highness got completely involved with the children, there was nothing the children were doing around her that wasn’t ok. She was just fab.”

Super Siblings, which was set up in 2018, was borne out of Sophie’s own experience. She said: “I have a daughter Elyse who is 16 and when she was eight we had our son Carson. Carson was born very young and very poorly. He suffered a large brain bleed on both sides of his brain.

“On top of that he has an extremely rare brain diagnosis. There are only 35 people world wide who have the gene mutation he has. Those first couple of years with Carson were very intense. There were lots of hospital trips, he is epileptic, he had a lot of issues.

“In that time, Elyse didn’t know who was picking her up from school, she didn;t know if mum or dad were going to be home. She didn’t know if her brother was home, happy or safe or being rushed to hospital and that was really, really tough.

“In that moment of my whole family network and support group being separated with dad at the hospital with Carson and me at home with Elyse, I just saw how broken she was. Seeing that sadness on a child's face going into her own home, I had to do something.

“I just sat her down and said ‘how can mummy help you with this? We can’t change Carson and can’t fix that so what can mummy do to help make this easier?’

“And she said, ‘I want friends who understand mummy’. So I said ok, let’s set up a support group for children with siblings with disabilities, and that’s what we did.

“Elyse said ‘I want to call it Super Siblings’ and that’s how it started.”

Sophie describes Super Siblings as a ‘time and place they can come, and come first. It’s a time where they can do what they need to do. It’s a time for them to talk and discuss their feelings, their fears. If they want to talk about their SEN siblings as well they can, but if they want to forget about their caring role, and forget about home, they can do that to.’

And Super Siblings is a unique group. “There is nothing out there like us,” said Sophie. “There are a few charities out there who support siblings of disabled children in a way of counselling, late support in life with jobs. My aim for this was just allowing children to be children because that is what is taken away at such a young age.

“They have to be independent, giving them that childhood in that space, that’s what I think is important.”

The Duchess also visited Manor Green College – you can video and full story of that visit here.