Sileby mum takes on Rainbows walk in honour of son

A Sileby mother is encouraging women in Leicestershire to sign up to a moonlight adventure and support the hospice which cares for her four-year-old son.

Edward Olweny was born with Partial Trisomy 9, which means he has an extra chromosome. Although he is four-and-a-half years old, he has the development age of a one-year-old and mild Cerebral Palsy. Edward didn’t start learning to walk until he was three and suffers from hypermobility, meaning his joints are loose and unstable. He is also visually impaired so his parents, Gemma (30) and Jamie (34), cannot take their eyes off him as he is constantly tripping and falling. He has severe breathing difficulties and is unable to talk.

Because the condition is rare, his parents do not know what the future holds for Edward.

Gemma said: “I knew something was wrong with Edward at birth when he had an overbite and couldn’t feed; he was diagnosed with Trisomy 9 when he was three-weeks-old. We were told by consultants that they had never seen the condition before and they didn’t want to tell us he would be okay or not. They didn’t even know if Edward would make it out of hospital. They didn’t know if he would live for a year or if he would live until he was 20.

“We were just completely devastated. There is no other way we can describe it.

“Edward is the most loving boy you will meet. He has a hug for everyone and he is just so friendly. Edward just doesn’t stop. He has so much energy but he has no fear and a very high pain threshold. You cannot take your eyes off him; I am always having to hover over him. I can’t even leave him while I go to the toilet.”

At three-weeks-old, Edward was transferred from the Leicester General Hospital to the Leicester Royal Infirmary for an operation to inspect his airways, which were found to be significantly narrowed and the major cause of his breathing problems. He is also on medication to keep his airways open. Then at the age of two, Edward was back in the operating theatre for heart surgery to close an open duct.

Over the years, we have supported the Olweny family and now Gemma is taking on our Moonlight Walk, with a group of friends, to raise funds for us and is encouraging others to sign up to the event on Saturday 12 October.

Gemma, who also has a daughter, one-year-old Anya, said: “We were first told about Rainbows when Edward was a baby in hospital. When we knew it was a children’s hospice, we panicked as we thought it meant Edward was going to die. But Rainbows isn’t like that at all. We first went for a stay in 2009, when Edward was five-months-old, and it was so nice and nothing like we were expecting.

“Rainbows has been a godsend to us. Edward and Anya can both go there and do things together. When Edward is at Rainbows, I don’t have to worry. I know he is going to be looked after. And he loves going. He knows it is a place he likes. You can never get him past the Music Room without him wanting to go in and he loves the Hydrotherapy Pool and the Soft Play Room.

“Rainbows isn’t just for Edward, Rainbows is for the whole family. Having a child like Edward is incredibly daunting and we get so much help from the Family Support Team and everyone at Rainbows.”

Katie Baxter, events and community manager at Rainbows, added: “I would like to thank Gemma and her friends for taking on this event and I hope her story inspires others to sign up to the challenge and support children like Edward.”

The six mile sponsored walk starts at Charnwood Indoor Bowls at 10pm. Ladies, who are being invited to wear their PJs, will walk around Loughborough town centre before finishing back at the bowls club. Entry is £12. For more information, contact 0800 9521133, email [email protected] or visit