Loveable Lutterworth teen champions rare diseases campaign - The Rugby Observer

Loveable Lutterworth teen champions rare diseases campaign

Rugby Editorial 18th Jun, 2016 Updated: 27th Oct, 2016   0

A LOVEABLE teen with a condition which left her wheelchair bound and non-verbal is championing a campaign to fund the country’s first centre for children with rare diseases.

Seventeen-year-old Abigail Hancock from Lutterworth is calling on people from her hometown to join her in helping Birmingham Children’s Hospital Charity create the UK’s first Rare Diseases Centre for children.

Abigail was admitted to the hospital when she was just eight months old for an MRI scan after having a couple of epileptic fits.

The test diagnosed a rare condition called Tuberous Sclerosis, which causes mainly non-cancerous tumours to develop in different parts of the body.




As a result, Abigail has spent most of her life in and out of Birmingham Children’s Hospital and to say thank you, the happy and upbeat teenager is backing the hospital charity’s £3.65 million Star Appeal to help other youngsters like her.

Abigail’s mum, Deborah, said: “Abigail is so inspirational – even though she has a rare disease it doesn’t stop her making the most of life.


“She enjoys music, listening to stories and being outside feeling the wind in her hair. She also loves spending time with our adorable family dog, Ruby.”

Initially Abigail’s tumours were only detected in her brain, but over her lifetime she has developed associated problems including epilepsy, skin abnormalities and learning difficulties.

She has also developed Double Scoliosis, which means her spine has grown in an s-shape, and her tumours have spread across her body, including to the back of her eyes, with only her liver and lungs now suspected to be tumour-free.

As a full-time working mum, Deborah admits life becomes harder the older Abigail gets as she is now wheelchair bound and non-verbal. But with doctors initially predicting her daughter would only live into her early 20s, she is determined to stay strong.

“I won’t lie, life is challenging,” she said. “But when you love someone as much as I love Abigail, you go out of your way to keep them comfortable and to meet their needs. We’ve even moved house so we could accommodate her at home as that’s where we want her to be.

One of Deborah’s biggest frustrations is that they are no longer able to holiday abroad together as a family. She said: “Abigail used to enjoy being in the warmth, splashing around in the pool and feeling the sand between her toes.”

Every year Birmingham Children’s Hospital treats more than 9,000 children living with over 500 rare or undiagnosed conditions – but many patients, like Abigail, spend a lot of time seeing different specialists on different days in different departments all over the hospital.

The charity’s appeal will provide a single place within the hospital for all assessment, diagnosis, treatment, information and research.

Deborah is appealing to Leicestershire residents to help her raise funds by donating online, texting STAR to 70800 to donate £5 (standard network rates apply), organising a Star Trek night walk, hosting a Stars on Stage event or cooking up a storm with a Star Baking Challenge.

Visit www.bch.org.uk/starappeal for more information.

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