Thursday, 8 October 2015

The Preston Family

My daughter Libby died when she was a baby. Here she is with my husband. He is holding her moments after a final, failed attempt at resuscitation. It is the saddest photo I own.

Libby had a mitochondrial disease. I'd never heard of such a thing until she was born.

After Libby died someone told me about The Children's Mitochondrial Disease Network. This was in 1999, in the days of dial-up internet, before I even had an email account. I phoned the founder of The Children's Mitochondrial Disease Network, Paul Preston, and he very kindly spoke to me on a few occasions.

Paul was volunteering his time. The Children's Mitochondrial Disease Network has no paid staff and is supported entirely by donations. When Paul spoke to me he and his wife Rachel had already lost a baby, Kristen, to mitochondrial disease. He was also facing up to the devastating news that two of his older children, Stacey and Kieran, were suffering from a type of mitochondrial disease that had manifested more slowly, but would ultimately prove to be fatal.

Stacey died in July 2015, aged 20. Throughout her life she was cared for at home by Paul and Rachel. Now Kieran's condition has deteriorated to the extent that the family are making plans for his end of life care. Kieran is also cared for at home by his parents, siblings and various medical teams. Paul and Rachel are trying to raise some money so they can do some special things with Kieran while they still have time. 

I know what it's like to lose one child to this condition. I have no idea how it feels to lose three. I have no idea how it feels to provide round-the-clock care for two decades. I know I'm a writer, and I make a living by imagining things, but this particular thing is beyond my imagination.

Times are hard for many people and there are so many worthy causes. But if you're lucky enough to have a spare fiver, do think of Rachel and Paul and their family.

Kieran's GoFundMe page.

1 comment:

  1. The Preston family's story is very moving and they have stayed in my thoughts since reading this. As you say, it is beyond imagining. I hope they can make all Kieran's wishes come true.
    An insight into how desperately sad it must be for a child to be born with this condition can be seen in your husband's face - so proud of his child while having to be incredibly brave at the same time.