355 %
£10,657
raised of £3,000 target
by 72 supporters
Donate
Brynmor Sandison avatar
Brynmor Sandison

Team Aurum - RiverRatRace - 16th August 2014

Bryn and Team Aurum - the River Rat Race Challenge for Corpal - Supporting those with Agenesis of the Corpus Callosum and Aicardi Syndrome because we would like to help raise some money for Corpal

355 %
£10,657
raised of £3,000 target
by 72 supporters
Donate
  • Event: River Rat Race - 16th August, 16 Aug 2014

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 August 16th we will be running/swimming a 10km aquatic obstacle course through the Docklands. In doing so Team Aurum hopes to raise money for Corpal, a charity close to my family’s heart. 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 Lisa and I were expecting our daughter Minnie we were told of issues very early on in our pregnancy. With multiple antenatal scans, and eventually MRI scanning at 32 weeks, we were 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 we reached out to Corpal and some of its members. By luck Corpal were having their Annual General Meeting the week after our 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 adult 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. We believed that if we 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. We know that by raising money for Corpal we will be helping to provide families with the emotional support and understanding that we received during Lisa’s pregnancy.

After Minnie’s 3rd MRI scan at 12 months old, she was remarkably found to have an intact Corpus Callosum. We will never be sure if this was a miracle or a series of misdiagnoses, but either way we feel incredibly blessed to have Minnie - and it was the emotional support of Corpal which allowed us to be where we are today.

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

Bryn, Lisa and Minnie xxx


Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity. So it’s the most efficient way to donate – saving time and cutting costs for the charity.

Photos

3
  • Corpal
  • Team Aurum - Going for Gold!

Supporters

72