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Lee Harden

Lee's Crystal Palace 5k Run page

I am running the Crystal Palace 5k with Autumn for Corpal - Supporting those with Agenesis of the Corpus Callosum and Aicardi Syndrome because we want to raise money for Corpal

188 %
£940.00
raised of £500 target
by 35 supporters
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  • Event: Crystal Palace 5k Run, 13 Jan 2019

Corpal - Supporting those with Agenesis of the Corpus Callosum and Aicardi Syndrome

Corpal supports those affected by Agenesis of the Corpus Callosum which means that the major pathway across the two hempisheres of the brain is damaged or missing. Corpal is a Not for Profit group and is run by parents, and carers of children and Adults with ACC or Aicardi Syndrome.

Charity Registration No. 1086019

Story

Thanks for taking the time to visit my JustGiving page.

On January 13th 2019 my daughter Autumn and I will be running the 5k through Crystal Palace. In doing so we hope to raise money for Corpal, a charity close to our hearts. Corpal supports children with a rare neurological condition in which the Corpus Callosum - the superhighway which connects the two hemispheres of the brain - fails to develop, (a condition known as ACC). Effects of the condition are variable and can range from developmental delay to severe physical disabilities.

When our friend was pregnant with her daughter she was told of issues very early on in her pregnancy. With multiple antenatal scans, and eventually MRI scanning at 32 weeks, she was informed that there were  issues with her baby's Corpus Callosum, (which typically develops during weeks 12-20 of gestation).  

Wanting to gain insight into what it would be like dealing with a potentially severely disabled child, our friend reached out to Corpal and some of its members. By luck Corpal were having their Annual General Meeting the week after the diagnosis.  It was here she met a range of families, with children dealing with ACC across the spectrum. Some children she met would never walk, would never talk and would require constant care throughout their entire lives.

Meeting everyone at Corpal gave my friend a better appreciation of how truly impacting a child of special needs can be on a family, and the workload and commitment that is required to support a child with ACC. What really inspired her was seeing the way in which the parents of these children faced their ongoing challenges - with pride, dignity and drive. The love they gave, and the love in whatever form was returned, was a privilege for her to experience.

Whilst there is no cure for ACC, the condition can benefit from a range of developmental therapies and educational support services. I know that by raising money for Corpal, Autumn and I will be helping to provide families with the emotional support and understanding that our friend received during her pregnancy.

Autumn and I will be running this race with my friend and her daughter - who is now 6 years old. She has low muscle tone so this race will be tough, but she is an amazing and determined little girl and I know together the four of us will make it. #GirlPower.

We thank you in advance for your generosity towards this very worthy charity.

With huge love,

Lee & Autumn xxx

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