Reuben's Story
Reuben was born with an extremely rare genetic disorder. His mum and dad knew that his life would be very short, and were determined to give him the best life they could. This is Reuben’s story.
Sophie and Sean have four children; Olivia, Harry, Reuben and Felix. Their firstborn baby, Olivia, died 10 years ago at the age of just eight months. It was because of their journey with Olivia that they knew almost as soon as he was born, that Reuben had the same condition.
Sophie and Sean bravely shared their story with us:
It was a shock to have this happen to us again and we felt completely heartbroken. It was like daggers in the heart and we felt as if we were grieving for the loss of the life that our baby was not going to have.
Even though we were in shock, once it had sunk in, we pulled ourselves together and thought, let’s give Reuben the best life that we can give to him.
Reuben was a relaxed little boy. Simple things would make him happy and he would give us such a lovely smile. He would respond to sensory experiences like bright lights and sounds, or just by holding his hand or giving him a cuddle. It was the small things that can get overlooked, but they mean so much. He taught us to enjoy these simple things in life. It’s hard to put into words how special Reuben was. Until you have a child with additional needs, you don’t realise the extra love and care that you have to give.
Reuben’s older brother, Harry, used to give him loads of attention and always got the most smiles and laughs, it came naturally to Harry. He accepted Reuben’s condition from day one and the love he had for Reuben was unbreakable.
Olivia and Reuben had an extremely rare genetic disorder which causes the brain to slowly deteriorate. The condition is currently identified as PIGB related glycosylphatidylinositol GPI disorder. Both of the children had heart defects, dysplasia - affecting the growth and development of cells in the body, and complications with their digestion.
After Olivia had passed away, we wanted to have more children, so we went for genetic counselling. Although we hadn’t been given a clear diagnosis of Olivia’s condition at that time, we were told that ‘lightening wouldn’t strike twice’, so we felt confident to go ahead. We were blessed with Harry and there were no problems so after more genetic counselling, we were given the thumbs up to try for Reuben.
As soon as he was born we knew that Reuben had the same condition as Olivia. We were told by one of the top genetic consultants that children with genetic disorders usually follow in the same pattern as their siblings. This meant that it was likely that Reuben would have similar health issues to Olivia.
When Olivia passed away, we had been cared for and supported by Acorn Children’s Hospice in the Midlands and so when we were referred to Naomi House & Jacksplace we knew what a lovely place a hospice for children can be. We wanted the same sort of care for Reuben.
We were really impressed with the facilities and the grounds at Naomi House & Jacksplace. The hydrotherapy pool was amazing and we had the opportunity to swim together as a family, even Reuben was able to go in. It was his favourite thing to do.
When Reuben was in the arts and crafts room or the sensory room, his eyes would open wide and become more alert and his breathing would improve and become more relaxed. He enjoyed every moment. When your child is going to have a short life, you need to make as many memories as you can.
We were so grateful to Naomi House when Felix was born. Sophie had to have an emergency C-section and Reuben was able to be cared for at the hospice while we were at the hospital. If it wasn’t for them, I wouldn’t have been able to be present at Felix’s birth, I would have had to stay at home looking after Reuben while Sophie went through it all by herself. There was no one else we could have left Reuben with.
Naomi House was a special place for Harry, too. Harry loved going and he particularly enjoyed speeding around the garden on the go-karts. He kept asking to go back after his first visit, it was a little treat for him as well. We were also able to leave Reuben for a short time, while we went out with Harry to give him some time on his own. We knew that Reuben was in safe hands and having the time of his life receiving all the love and the care that the team give.
Reuben passed away at home five days before Christmas at the age of just two and it was a complete shock. It was so sudden. We always knew that one day we would wake up and he might not have made it through the night, or that he might not come out of a seizure, but he had been doing really well. We had been amazed that he got to his first birthday and he was doing so well to get to his second.
We had all stayed up late the night before and so slept in that morning. Normally Harry would be the first up and into Reuben’s room. But that morning Sean went in to check on Reuben and turn his feeding pump off. He had been quite a while but then came back into our room and said, ‘Soph, Reuben has passed away.’ I was in shock and disbelief, and I just broke down crying.
Harry was still fast asleep in bed, so I went in to wake him up. He jumped out of bed and I got down on my knees to give him a cuddle and then told him. Harry broke down and was absolutely beside himself but he wanted to see Reuben. I held his hand as we walked into the room.
Harry got into bed beside Reuben and looking into his eyes, cuddled him and stroked his hair singing little lullabies, just like he did every morning. We were so proud of Harry, but were in bits that our Reuben had passed away.
We had grieved when Reuben was first born, because we knew his life would be so short, but we came to terms with that. But when Reuben passed away, that grief was ten times worse. We’d built that bond with him, he was our little boy and we’d accepted his condition. The little things had meant so much. When he smiled, it was the equivalent of another child riding a bike for the first time and it made us so happy. He didn’t laugh very much, but when he did, it was the best feeling ever.
After Reuben had passed away, we knew we wanted him to go straight to the bereavement suite at Naomi House. It’s a better setting for a child, and more warm and friendly than a chapel of rest in a funeral home. Reuben lay in the Butterfly Room and this gave us the freedom to visit when we wished. It was a safe space to be able to grieve as a family.
The Family Support Team were there to help us with the practical arrangements and planning the funeral. They were there to support Harry too and he was well looked after. He could go and play in the garden if he wanted to.
There were some colouring pencils and paper in the room and Harry picked up the pencils and started drawing. He drew a picture of a happy face lying on the bed, four sad faces and a little rainbow. Harry explained that it was Reuben and he was happy because he was free and this was us four around him and we were really sad. We were so amazed that he was able to do that at the age of just eight.
We could have stayed overnight at Naomi House, but decided to just visit Reuben during the day. We chose the clothes that we wanted Reuben to be buried in and as a family we decided after the second day that it was the right time to say our final goodbyes.
The support of Naomi House & Jacksplace was amazing for our family. The specialist care and support they give is irreplaceable. It almost feels like you’re up high in the trees and Naomi House & Jacksplace is your safety net. If we were going to fall, they were going to catch us.
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