Local mum of three, Nicki Pybus, has raised £275 for charity The Sick Children’s Trust, which supported her when her baby was being treated in Great Ormond Street Hospital.
Nicki’s daughter Emily was born with congenital cystic adenomatoid malformation, a rare condition which meant her right lung was made up of cysts, rather than healthy lung tissue. At just 9 months old, Emily had surgery at Great Ormond Street Hospital in London to remove 70% of her lung.
During Emily’s treatment, Nicki stayed at The Sick Children’s Trust’s Guilford Street House, just minutes from Emily’s bedside. The ‘Home from Home’ provides high-quality free accommodation for families with seriously ill children being treated at GOSH. Without the room, Nicki would have had to make the two hour journey daily to be by her baby’s side.
To mark the one year anniversary of Emily’s lifesaving surgery and to say thank you to the charity, Nicki and her partner Jake Johnson threw themselves out of a plane. For Jake, who is petrified of heights, the challenge was once in a lifetime and his work W.R. Bullen generously recognised his achievement by supporting his fundraising.
Nicki says: ‘I had nowhere to stay when Emily was sick. If I hadn’t had a room in Guilford, I simply wouldn’t have been able to be there with her. It doesn’t bear thinking about.
‘I knew I wanted to do something outside my comfort zone and give something back to the charity, so decided on a skydive. It was an incredible experience, free-falling before drifting down to earth. It’s something I’m desperate to repeat but Jake’s sworn never again. I’m so proud of him for beating his fear and supporting me in my challenge to raise awareness for such a special charity.’
Since her surgery, 21 month old Emily’s back home and doing well with support from her local hospital. Due to her condition, she’s still small for her age and has just started walking and taking her first tastes of food, rather than relying solely on a feeding tube into her stomach. She’s doing well, but doctors have discovered that Emily also has a multicystic dysplastic kidney and will need future surgery to remove her kidney. In the meantime, the family are enjoying having her at home until time comes to travel back to GOSH.
Knowing they’ll always have a place with The Sick Children’s Trust to stay near to Emily’s side, Nicki’s planning future adventures for The Sick Children’s Trust, but has promised partner Jake can choose the next one!