May charity news – Over The Wall
“We learnt to have fun again”
Noemi Dorgu, 35, from Bedfordshire reveals how Over The Wall Family Camps gave them quality time together
Being told your child has cancer is something no parent is ever prepared for. Within seconds your world comes crashing down because you know, no matter what happens after that, life will be forever different.
When my daughter Zofeya, now seven, first started to experience problems with her balance and coordination at four years old, cancer was the furthest thing from my mind. I thought perhaps it was a problem with her hips so took her to the GP just to be sure. We were referred for a check-up with a paediatrician, which we knew might take months to come through, but we didn’t think there was any rush. She didn’t seem to be unwell.
Then, in July 2013, my family and I met up with friends and I noticed their one-and-a-half-year-old was happily running around, while Zofeya couldn’t even walk properly without losing her balance. I knew it was affecting her confidence so decided to take her to A&E at Luton and Dunstable Hospital to get it checked out.
Zofeya was given several tests to assess her coordination and sent for an MRI scan, which showed an aggressive tumour on her brain.
That evening we were transported by ambulance to Addenbrooke’s Hospital in Cambridge, where Zofeya was put on steroids to reduce the swelling on her brain. I was in complete shock.
A week after her diagnosis, Zofeya was given surgery to remove the tumour. However, she was then diagnosed with Posterior Fossa Syndrome (PFS), which is a group of neurological symptoms that can occur in children after brain-tumour surgery. For over a week she was unable to move or talk, which was heartbreaking, and, although she slowly regained control of her body, she had to learn everything again.
As the tumour was likely to regrow, Zofeya started 30 sessions of radiotherapy and a year’s course of chemotherapy. The treatment caused her to lose her high-frequency hearing, and her pituitary gland – which is in charge of growth hormones – has been damaged. Then, in the summer of 2014, shortly after responding to a leaflet we found in the hospital waiting room, we were offered a place on an Over The Wall Family Camp. We were so excited.
For the first weekend since Zofeya’s diagnosis, instead of looking at all the limitations of what we couldn’t do, it became about what we could try and just have fun as a family. The volunteers were amazing and it was fantastic seeing our son, Malacai, now ten, having fun, as Zofeya’s illness has unfortunately meant that his needs have had to come second for a while.
Zofeya’s treatment ended in October 2014 and she has now been cancer-free for over a year.Her illness and the treatment have changed her in many ways – she is not as physically able as other children her age and has lost a lot of confidence. We have had to accept she will never be the child she was before, but that’s OK. We are helping
her build up her strength and confidence through activities such as ballet and horse riding.
We are very aware the first five years hold the highest risk of cancer returning, so we just have to pray it doesn’t come back. We are trying to learn to let go and enjoy life because no one can live under this constant fear.
In May 2015 we visited another Over The Wall Family Camp, much to the joy of both Malacaiand Zofeya. It was absolutely amazing to see them just having fun and being children. We’re so grateful to the camps, they’ve helped us see a side of ourselves we hadn’t seen for such a long time.
Over the Wall – THE FACTS
- Over The Wall (OTW) was founded in 1999 and is a member of The SeriousFun Children’s Network, founded by the late Paul Newman.
- OTW provide free-of-charge therapeutic recreation activity camps for children with life-limiting illnesses and family weekend camps, where the whole family are supported.
- With a focus on fun, OTW camps help to build children’s confidence and self-esteem and help them to cope with the everyday challenges they face.
- In 2016, OTW will run 12 UK camps and welcome up to 660 campers.
- Visit otw.org.uk to find out more.
BIG GIVE UPDATE
Over The Wall will use the money raised to run four Family Camps – one of which takes place this month – for families with children living with serious illnesses. The camps provide respite and relaxation, as well as helping families to connect with those in a similar position.
Photo: Paul Cahill