Living with cerebral palsy by Ceri

Twelve-year-old Franceska has cerebral palsy and severe scoliosis, and has been in and out of Great Ormond Street Hospital (GOSH) since birth. Here her mum Ceri shares their story.

The beginning

"I had a condition called an amniotic fluid embolism, which is very rare, and through me being poorly, this obviously made Franceska poorly. I had an emergency caesarean and there were difficulties at birth, which meant Franceska was starved of oxygen. She was left with cerebral palsy and lots of other complex needs.

"Deep down I knew that from day one there were problems because she was in special care for quite a while. I knew from the start that things weren’t going to be quite right because of her being starved of oxygen for quite a period of time.

Referral to GOSH

"I was referred from my local hospital when problems arose that they couldn’t deal with, firstly when Franceska was a baby and then for various things as the years have gone on. Initially it was regarding her feeding and then we’ve come back again over the years for related problems that Franceska has. We’ve been coming to GOSH for twelve years now.

"The consultants have always been really, really nice and have always been open with us. We’ve had lots of consultant over the years. Our care initially was divided between GOSH and Addenbrooke’s Hospital (Cambridge), but just recently, over the last year and a half, everything has been under GOSH.

Specialist care

Photo of Franceska
"For me, the highlight of coming here has been able to get Franceska better. And knowing that you’re going to one of the best hospitals in the world gives you a lot of reassurance - she’s under the best care she could be possibly have.

"The staff have been very good and are always at the end of the phone if I need them. The Palliative Care team at GOSH have also been great in managing Franceska’s pain relief, and it’s always very comforting to know I have the support should I need it.

Tough times

"The lowest point was last year. We came in over March for Franceska to have a routine operation to to remove her kidney stones, but six months later, we were still there.

Everything just snowballed and just as we got over one thing, she then got a chest infection. So we’d get over that, and then it was some other problem. It was really the low point last year and I stayed with her the whole time as she was in intensive care. She pulled through and we were able to go home.

Life at home

"At the moment Franceska is on IV fluids, which I manage at home. She has problems feeding so she’s fed into her bowel, and because her bowel doesn’t really want a lot going in there, she’s on minimal feeds. She also has CPAP (continuous positive airway pressure) overnight as well.

"Managing Franceska's care at home is absolutely fine. You just do it. And because Franceska is my only child, I will do whatever she needs. It just slips into your everyday life and becomes routine. I’m very lucky to have such a supportive family as well.

The future

Photo of Franceska and family
"Franceska's condition has changed over the last year and half, quite dramatically actually. Up until recently, we managed to get a family holiday to Tenerife in every year, and we’ve been there ever since she was a baby. But this isn't possible now as Franceska is on IV fluids and oxygen for 24 hours, with CPAP overnight.

"She's now under the Palliative Care team at GOSH. We just live for every day and cherish every moment we’ve got with her, as we just don’t know what's around the corner.

"Franceska has severe scoliosis, as well as cerebral palsy, and her lungs are quite damaged. Another chest infection could really cause her big problems and we were very, very lucky that Franceska pulled through last time. We just take every day as it comes and just hope that she’ll be with us a little bit longer.

"I just think a lot of people think that the world’s ended when they’ve got a child with severe problems, but I just think you have to go with it, give them love and support, and just do your best really."

Medical Conditions