Meet Hope
Vacuum cushion seat
10-year-old Hope – named so, because all her parents had was hope – has quadriplegic cerebral palsy, meaning all four of her limbs are affected and she has limited head control.
Her family describes how a special vacuum cushion has transformed Hope’s life.
Born at just 27 weeks, Hope was given just a ten per cent chance of survival. Her mum, Rachel Lane, says:
“When we found out we were having twins we were told about the potential risks involved, but you never think it will happen to you. Unfortunately practically everything that can go wrong, did!
“We found out the girls had twin-to-twin transfusion syndrome. Hope’s twin sister, Ava, was getting all the goodness from the placenta, which meant Hope wasn’t getting enough nutrients or growing.”
Twin-to-twin transfusion syndrome (TTTS), is a condition that can occur in identical twin pregnancies who share a placenta. TTTS happens when there is an imbalance in the placental blood vessels that connect both twins. If the blood doesn’t flow evenly between the twins, one twin receives more blood and therefore nutrients, causing developmental problems.
Rachel continues:
“Doctors carried out a laser ablation procedure, which initially helped Hope grow, but then I caught Sepsis at 27 weeks. It was a really difficult time for us as a family. Hope was in NICU for 10 weeks and we had to take each day as it came.
“Hope needs a lot of support including physio twice a week. She can get very stiff, especially when she’s tense or upset. She also has scoliosis, which, at the moment is mild, but it means she needs additional support.
“She’s such a fighter though! Hope has been feisty from the get-go but despite everything she’s been through, she’s a chilled out, happy soul with a wicked sense of humour.”
Hope and her twin sister Ava were born at 27 weeks
Due to her condition, Hope requires specialist equipment to ensure she gets the support she needs.
Rachel comments:
“The NHS provided a specialist seating system to allow Hope to sit safely for things like mealtimes, but we didn’t have anything at home that she could relax in and get comfy safely.
“The physiotherapist advised that sitting on the sofa wasn’t good for Hope’s posture and could make her scoliosis worse, but she needs to be comfortable as well as supported. We looked into different options and found a special vacuum posture cushion that you plug in, and it moulds around the body. But it was expensive and we already have to fundraise to cover the cost of Hope’s physio.”
Hope attends physio twice a week, which the family have to fundraise for
So, the family reached out to children’s disability Children Today Charitable Trust, who were able to provide the equipment in partnership with the independent charitable trust, Essex Community Foundation (ECF).
When asked how the cushion has helped, Rachels says:
“It’s made such a big difference! Knowing that Hope is comfortable while her body is also being supported in the way she needs gives us peace of mind. We’ve also been told it’s helping to reduce the twisting in her spine, which hopefully means she won’t need operations to correct it.
“It’s just nice for us all to be able to feel like she’s included more too. Hope’s a big Disney fan, so she’s enjoying cosying up in, what she calls her ‘movie chair’, and watching films with her brother and sister. They are a really solid unit. Ava is Hope’s number one fan and Ben is very protective of her too – we all are!”
Hope’s twin sister Ava and her brother Ben are a solid unit says their mum, Rachel
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