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Lisa Sandison

Lisa and Minnie's Crystal Palace 5k page

Running Crystal Palace 5k with my Daughter Minnie for Corpal - Supporting those with Agenesis of the Corpus Callosum and Aicardi Syndrome because we want to support the Corpal Charity

125 %
£3,125.98
raised of £2,500 target
by 77 supporters
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  • Event: Crystal Palace 5k, 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 Minnie and I will be running the 5k through Crystal Palace. In doing so we hope to raise money for Corpal, a charity incredibly 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. Effects of the condition are variable and can range from developmental delay to severe physical disabilities.

When I was pregnant with Minnie I was told of issues very early on in my pregnancy. With multiple antenatal scans, and eventually MRI scanning at 32 weeks, I was informed that Minnie’s Corpus Callosum (which typically develops during weeks 12-20 of gestation) was missing (a condition known as ACC) and that it would never form.  There is no treatment or medical procedure to correct this disorder.

 Wanting to gain insight into what it would be like dealing with a potentially severely disabled child, my husband Bryn and I 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 we met a range of families, with children dealing with ACC across the spectrum. Some children we met would never walk, would never talk and would require constant care throughout their entire lives.

Our decision to research and investigate as much as we did led us to 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 us 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 to experience.

I believed that if Bryn and I could bring our daughter into the world and show half their love and determination when facing potential challenges, then we would be bringing up a very special girl who would love in her own way and be loved in return – just as she and every child deserves to be.   

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, Minnie and I will be helping to provide families with the emotional support and understanding that I received during my pregnancy.

Having been warned Minnie may never be able to walk, running this race with her gives me more pride than ever before. Minnie has low muscle tone so this will be tough, but she is an amazing and determined little girl and I know we will do it.

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

With much love,

Lisa and Minnie xxx

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