Sister's solidarity: Sarah Lilly's journey caring for Vicky

One of Sarah Lilly's earliest memories is pushing her younger sister Vicky's wheelchair aged four. She became her second carer two years later.

Vicky was diagnosed with both quadriplegic and athetoid cerebral palsy at birth, and Sarah, the eldest of four siblings, recalls early life being a "constant battle".

"I remember pushing Vicky and my brothers being pushed by my mum in a double buggy," she says.

"It was all hands on deck."

The condition, caused by a lack of oxygen to the brain during birth, affects all four of Vicky's limbs and the family had to quickly adapt to raise a child with complex needs.

But as they navigated challenges together the sisters forged an unbreakable bond, with Sarah also working at the day centre Vicky attends.

Over the last four decades Sarah has watched her younger sister overcome hurdles most people will not experience in their lifetime.

They include a traumatic experience during lockdown at an independent living facility which led the family to contact police.

But in her 11 years working at Cerebral Palsy Midlands, in Harborne, Sarah has seen Vicky achieve things they initially never thought possible - including gold medals for dancing and a love of karaoke.

"I see an independent woman who is very capable despite having profound disabilities," says Sarah, beaming with pride.

Growing up in Birmingham, their parents Allyson and Malcolm Lilly had to navigate inconsistent carers, funding, equipment and therapies.

"My dad spent most of his working life as a boiler operator at Cadbury's in Bournville working shifts to provide for us all," Sarah recalls.

While cerebral palsy is not degenerative, as Vicky ages she experiences increased stiffness, fatigue and secondary health challenges.

She has speech and language impairment but is able to communicate via body language, pointing and communication aids such as books which help her to indicate her thoughts and feelings.

"When words are difficult, Vicky has a way with her facial expressions, the way she moves around, her independence with her chair - she has a way of letting her feelings known," says Sarah.

It was when Vicky was 18 and leaving special education that the family faced another round of challenges.

"Support dropped off significantly," says Sarah.

"The transition from children's to adult services was extremely difficult, and we found there was very little in place to support young adults with complex needs.

"She went from structured education and support into a situation where she was largely at home with our parents."

What followed was years of inconsistency with carers who sometimes did not turn up and responsibility fell onto their mother.

The physical challenge of caring for Vicky has left her with chronic pain, rheumatoid arthitis and fibromyalgia.

Despite the damage to her brain, Vicky retains capacity in most areas and is able to make her own decisions with the right support.

In her early 30s, she moved to an assisted living facility to live as independently as possible.

It should have been a fresh start, but it coincided with the national lockdowns of 2020 and Vicky became more isolated than ever.

When her family were able to see her, they immediately saw she had become withdrawn and disengaged. Her physical condition had also declined, with matted hair and poor hygiene.

Vicky was able to communicate to a clinical psychologist that she had been sexually assaulted, and the family called in police.

She has been able to consent to Sarah sharing her harrowing experience.

Sisters' solidarity

"She expressed that it was a very distressing experience, and while she may not communicate verbally in detail, her emotions and reactions made it very clear how it affected her," says Sarah.

Vicky was moved to a new home and the investigation went on for several months but eventually closed due to a lack of evidence.

But in a new supportive environment, Vicky was once again able to thrive.

"She refuses to let it define her," Sarah says.

"When things have gone quite difficult for us I was here the next day and every day after it - solidarity in sisterhood."

Sarah had been working in marketing when she saw an ad for a role at the day centre in Harborne that Vicky loved.

"There was a position that came up and I thought I could make a difference," she says.

"I didn't think I could work in the charity sector because my home life was full of battles but I think I've found my calling here."

Spending several days a week together has had a profound effect on both of their lives.

Her family and friends can only watch in wonder at what she will go on to accomplish next as she continues to amaze them daily.

"Vicky has really come out of her shell, doing more activities without me as her sister," says Sarah.

"Getting gold medals, having best friends, going on holidays and doing karaoke - she's a dancing diva queen and I'm so proud with how far she's come.

"She's the light of my life and she will say the same about me."

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