Nadia and Chloe’s Story

Chloe Bowes has a condition called Bilateral Perisylvian Polymicrogyria (BPP). This is a rare neurological disorder that affects the cerebral cortex (the outer surface of the brain). It is a subtype of a broader condition known as polymicrogyria.

The 15-year-old has four-limbed paraplegia, as well as limited head and trunk control. She is non-verbal, has swallowing issues and is fed by a gastrostomy.

Chloe also has epilepsy and secondary cerebral palsy. She has a compromised immune system, which makes her prone to many infections, and needs full support in every aspect of her daily life.

Despite these challenges, mum Nadia said: “Chloe’s a very bright, happy, funny and sociable young girl who loves school, her friends and family. She also loves music, babies and animals!

“Our relationship with the hospice was established when she was very young and I’m so thankful for this.

“It’s been a constant throughout her life and we’ve received many services over the years, ranging from day care and overnight stays to outings, activity days, information forums and home visits.

“As well as all the fun stuff, they have offered their support when Chloe and I have been close to crisis point, including being a counselling service for myself after a particularly traumatic period when Chloe was on a ventilator for a month in an ICU.

“There are other examples, including overnight breaks for Chloe during the Covid lockdown, when the isolation of shielding was damaging our relationship, and also very recently, when staff visited Chloe while she was in hospital. It meant I could take a break and nip home to feed our animals.”

Nadia, who lives in Great Paxton, says she finds it hard to put her gratitude into words.

“The care and support is given with such warmth and kindness from the staff,” she said.

“It’s hard to put into words how appreciative we are and just how valuable the service is.

“It’s been a lifeline and helped me, as a parent, to find the strength to get through some dark times.

“It’s also provided some special times, wonderful experiences, joy and laughter.

“The staff have always been so kind and professional and displayed such genuine fondness and affection for Chloe.

“As a parent, I couldn’t ask for more and am so very grateful.”

Both Chloe and Nadia recently met The Duke and Duchess of Cambridge during the Royal couple’s visit to Milton.

Published in July 2022

Families’ stories and experiences are unique to them and we have been kindly granted permission to share this family’s story. If you have been affected by what you’ve read or have a question and would like to talk to someone, please contact your local children’s hospice service or Together for Short Lives, the UK charity that supports families caring for seriously ill children (tel: 0808 8088 100). 

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