As I do every year, last April I applied for a place at the London Marathon.  Unfortunately my first timers luck in 2010 is yet to be repeated, and I didn’t get a place again.  But this time there was a leaflet offering guaranteed entry to the Edinburgh marathon. It also happens to be on my wedding anniversary.  We love Edinburgh, and a child free weekend what could be better!

Then during a moment of temporary insanity, I suggested running a marathon in each of the UK countries.  The maths somehow went wrong and before I knew it I was signed up to 6 (including 3 in 4 weeks) all to raise money for the charity closest to our hearts.

So this year I will be running

• Deep River Rock Belfast City Marathon – 4^th May
• Edinburgh Marathon – 31^st May (and the wife gets to carry me home later, lucky lady!!!)
• The Wales Marathon (Tenby and the Pembrokeshire coastline) -    5^th July
• Ikano Robin Hood Marathon – 27^th September
• The Plusnet Yorkshire Marathon  - 11^th October
• The Abingdon Marathon – 18^th October        

I’m going to be running for SWAN UK (Syndromes Without A Name), which is part of the charity Genetic Alliance UK.  They support children like Jackson.  As many of you will know, our 3 and a half year old son Jackson has an undiagnosed genetic condition that has caused him to suffer with a number of symptoms, some painful, some not, which have greatly affected his development.  At 3 and a half he is unable to talk, has limited independent mobility and an unknown prognosis.

SWAN UK provided the support we needed.  Jackson first developed symptoms at approximately 6 months old.  We spent 9 months feeling lost in the health and social care systems, and without a diagnosis there were many areas of support we didn’t qualify for.  Then we came across SWAN UK.  They provide information, support and a platform to talk to other parents of undiagnosed children to share the good and the bad of our child’s life. They also organise regional and national meet ups for us to spend time together as normal parents talking through our experiences.  They are growing steadily and are now able to provide more support on the ground through a regional network of trained volunteers who act as parent representatives.  

1 in 25 children are born with a genetic condition and around 50% are undiagnosed.  Families often find themselves feeling isolated and lost in the system with no diagnosis or clear 'care pathway'.  There is a huge need for support, but SWAN UK is still a small project.  It is the only dedicated support for undiagnosed families in the UK.  They vitally need funding and awareness and if you have any pennies spare – they will be much appreciated.   

If you’re in the area and would like to come along and hurl some abuse, I’ll be the one in the pink running vest, and if you want to really get to me you’ll be drinking a nice cold beer.

Either way thanks for reading and donating it all helps SWAN UK to raise awareness and ensure other parents gain access to a support network.