Monday, December 07, 2009

The Joshua Deeth Foundation – honouring a much loved baby son

When you first become a parent, it’s a daunting experience, no matter how much you’ve always dreamed of it. How on earth do you meet the needs of this small person? Thankfully, you come into contact with others in much the same boat and you can help each other chart a path through those challenging early years of raising children. It’s quite a bonding experience and I know that the people I shared those special years with will be friends for life.

When Anna was small, I met a lovely group of other mums at a local toddler group and we spent a lot of time together. Although some have moved away and we don’t see each other so often now, time and distance don’t really seem to matter for our children as much as for us. Louise is one of those special mums. She’s pretty much on the same page as I am with the attachment parenting stuff, except she’s better at it. She now lives in Crieff and has 4 lovely little girls. Over the years, I got to meet her fantastic, close family, including her younger twin sisters, Nicola and Emma, both of whom have become loving mothers themselves.

Nicola had her first son Charlie in 2007, and a wee darling he is, too. In August this year, her second son, Joshua was born. On 22 November, sadly he passed away, having just been diagnosed with an extremely rare neurological condition, Pontocerebellar Hypoplasia Type 1. Nicola’s husband Stephen eloquently tells Joshua’s story here.

I can’t imagine a greater ordeal than Nicola and Stephen have been through and I have so much respect and admiration for the way they are dealing with their devastating loss. In amongst the pain they are feeling, they’ve found the energy and motivation to want to help others in the same situation. They have set up the Joshua Deeth Foundation, to honour the life of their son, to raise awareness of his and other rare neurological conditions and to support other parents. Nicola spoke to the Press and Journal and the Ross-Shire Journal the other day.

You might remember earlier this year that I wrote about Amy and Friends, a charity set up by Jayne Hughes to help others with her daughter’s rare condition, Cockayne Syndrome. In a relatively short space of time, the work of Amy and Friends has provided lots of help and support to other parents, as well as retreats for the children, but, crucially, has brought together medical professionals across the globe and given out information about new treatments that are being developed.

When Jayne’s daughter Amy was diagnosed with Cockayne Syndrome, there was literally no information available for her. Her work has ensured that there is somewhere for parents to turn, a source of light when they’re scrabbling around in the dark, numb and shocked.

The point of this post is to give Nicola and Stephen support in publicising the Joshua Deeth Foundation. If you’re reading this and you can think of someone they can help, or give them any information to enable them to help others, please get in touch. Please also spread the word by sharing on Facebook or Twitter or in any other way you can think of - you never know when it might reach someone who can either help or needs help.

1 comment:

shashank said...

Here is a link to more information about the genetics of Cockayne Syndrome that was prepared by our genetic counselor and which has links to some useful resource for those dealing with this condition: There is also a number listed for anyone who wants to speak to a genetic counselor by phone. I hope it helps. Thanks, AccessDNA


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