Brothers and sisters who come to hospital with their unwell siblings will now have games consoles to play with thanks to a generous Snettisham family.
Charlie Lavvaf (8) has often joined his father Pete and mother Alison Hipkin during their regular trips to The Queen Elizabeth Hospital’s Rudham Ward with three-year-old Evie, who was diagnosed, Rhizomelic Chondrodyslasia Punctata (RCDP).
Evie is among 40 children in the world with the life-limiting genetic disorder. Youngsters with the condition often suffer with respiratory infections, heart defects and an inability to grow.
Evie, who weighs just 12lb, has regularly had to be admitted to the children’s ward due to respiratory infections and Charlie has accompanied his parents, which prompted them to raise money to buy games consoles and equipment for other siblings to play with.
Earlier this year, Pete raised £6,300 for Genetics Disorder UK by climbing to Everest Base Camp. He also raised an additional £2,000, with help from Heacham Minors FC, which has been divided between Rudham Ward, the QEH’s Neonatal Intensive Care Unit (NICU) and East Anglian Children’s Hospice.
On Friday, December 15, the family with Nigel Jeavons of Hughes Electrical in Hunstanton, and the football club’s Andrew Dix and Ian Guymer, presented games consoles to Rudham Ward along with £500 to the NICU.
Pete said: “The aim of the Everest trip was to raise awareness of RCPD along with money. That donation will be helping children in the future but we also wanted to do something now to help other local good causes.
“Throughout our fundraising we have received so much support from both Nigel at Hughes, who kindly donated an Xbox One and an Ipad as well as everyone at Heacham Minors FC and we can’t thank everyone who has supported us enough.”
Alison added: “When Evie is ill our first thought is to pack her bag and get here quickly so unfortunately sometimes we do forget to bring something for Charlie.
“We feel for the siblings who come into hospital with their brothers and sisters so we thought it would be nice to have something here for them and that is why we wanted to buy the consoles. Charlie is the driving force behind this idea.”
Evie was born on Castle Acre Ward in January 2015 when staff noticed that there might be something wrong.
Alison said: “Staff noticed that Evie had a problem with her cataracts and short limbs during one of the final checks. We were then put on NICU for four days.
“As the condition is rare, they contacted a hospital in London who advised that bloods were taken. Eight weeks later, it was confirmed that Evie had RCDP.
“She has a big character. She knows her likes and dislikes but most importantly, she is a fighter.”
Pete said: “It was tough when she was first diagnosed and for the first six months I was in bits. Once you get over the initial shock, you can’t let it get you down. We have a lovely boy and he deserved better than that.”
Charlie was also delighted to make the donation with his parents.
He said: “I think it is going to good for other brothers and sisters will have these. I think they will help to take their minds off what is going on.
“I have been here a lot with Evie and my mum and dad. A lot of people help and support me.
“I love my sister and you can’t just worry about Evie having something wrong with her.”
Chief Executive Jon Green has thanked the family for their support to the Children’s Ward and NICU.
He said: “I would like to say a big thank you to Pete, Alison, Charlie and Evie for making this wonderful donation to the Hospital. Pete truly has gone the extra mile by climbing to Everest Base Camp to not only support the families currently being treated at the hospital but also those who will come in the future.
“The donations of money and games consoles are going to make a tremendous difference to the siblings who will be accompanying their families into hospital.
“We place a strong emphasis on Staff, Patients and Community within the Trust and we could not do the important work we do without the support of families like Pete, Alison Charlie and Evie.”
Pictured, back from left are: Andrew Dix, Junior Sister Isobel Pearce, Alison Hipkin with Evie, Pete Lavvaf, Ian Guymer, Nigel Jeavons of Hughes: front – Health Care Specialist Mandy Calvert, Charlie Lavvaf (8), Senior Healthcare Assistant Selina Hawkins and Health Care Specialist Sophie Carter
Alison Hipkin with Evie and Pete Lavvaf with Neonatal Nurse Julie Oughton