Three of our families have enjoyed a once in a lifetime opportunity attending the Prime Minister’s Christmas Party
Three of our families have enjoyed a once in a lifetime opportunity attending the Prime Minister’s Christmas Party. Nine-year-old Preston, seven-year-old Edward and three-year-old Gurmukh attended the Christmas extravaganza at 10 Downing Street on Monday with their families. They were entertained by magicians, wowed Santa, enjoyed fun and crafts as well as meeting Theresa May.
Preston was diagnosed with Neuroblastoma, a cancer of specialised nerve cells called neural crest cells, in January 2013. Over the years, Preston has endured chemotherapy, a stem cell transplant and radio therapy. He is currently undergoing chemotherapy. “Preston has really been through it,” said mum Alice.
“But he has had it for half of his life now so he doesn’t know any different anymore, which is sad. Preston is prone to infection and if his body temperature gets too high, he has to go in hospital. It’s very upsetting that he can’t play like other boys his age. We don’t think about the future we just stay positive and take each day as it comes.”
Preston loves spending time at Rainbows and a firm favourite is the Arts and Craft Room, where he can be creative as the specialist Play Team help Preston and his family to make special memories.
Preston said: ““The party was great! They had a magician and a princess and even Santa was there. We got to meet the Prime Minister, she was really nice.” Edward was born with Partial Trisomy 9, meaning he has an extra chromosome. He has received respite care at Rainbows since he was five-months-old. He was accompanied to Downing Street with his mum, Gemma, and five-year-old sister Anya. Edward has the development age of an 18-month-old. He didn’t start learning to walk until he was three as he suffers from mild cerebral palsy and his joints are loose and unstable.
Edward is visually impaired and due to misshapen airways, has breathing difficulties. He is also unable to talk and can only communicate using signs and pictures. “Edward is the most mischievous and loving boy you will meet. He has a hug for everyone and he is just so friendly,” said mum Gemma.
“He has been through such a lot with operations and hospital trips, and we have no idea what the future holds as his condition is so rare, but Edward is always happy. “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. 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. “Having a child like Edward is incredibly daunting and we get so much help from the Family Support Team and everyone at Rainbows.
To get the chance to go to Downing Street was amazing. We’ve had a fantastic time. It was great getting to go in the famous Number 10 door – we saw Boris Johnson and the Prime Minister. “The party was so much fun, they had lots of activities for the children to take part in. We’ve all had a really great time. Thank you to Rainbows for making it happen.” Three-year-old Gurmukh has a life-threatening rare genetic heart disorder called Long QT Syndrome, which causes problems with the electrical activity of the heart. He also has low muscle tone so can’t walk properly and is profoundly deaf. “It has all been very traumatic,” added Sukveer.
“We had a normal healthy baby and then all of this has happened. He has been through such a lot. When we found out he had a problem with his heart, it broke me. Even now, I still get to appointments and have a good cry. But there is always someone worse off and we just have to keep going. “We have been going to Rainbows for a few months and it has been amazing. They have helped us out such a lot with so many different things with Gurmukh. Thanks to the Family Support Team, we now have a portable defibrillator, which could save Gurmukh’s life.
“Gurmukh loves going to Rainbows as well, there is so much for him to do there. He needs 24 hour care and I never let him out of my sight, but at Rainbows, I can relax and forget about things. “We are not sure what the future holds but we do know we have a really happy little boy.”