On the 25th of April 2010, my buddy Ken O’Hara and I will run the Virgin London Marathon.
This will be my 4th Marathon and Ken’s first.
We are raising money for climb. This is a not for profit organisation based in the UK. www.climb.org.uk
The organisation is set up to support and provide information to people with or carers of people living with an inherited metabolic disorder.
My daughter was diagnosed with a metabolic disorder called Urea Cycle OTC last year. As far as we are aware she is one of only two young girls in this country with this specific disorder and therefore services and support offered from the UK are very important to us. The UK would have several hundred patients with this specific disorder.
For anybody who has kids, their one and only interaction with a metabolic disorder is the “heel prick” test that is done on a child when they are just born. This is testing for a metabolic disorder called PKU. This is one of the most common of the metabolic disorders. For most people the test will be negative and that will be the last interaction they will have with any metabolic disease. Indeed for my daughter this test was clear. However from birth my daughters bloods showed some sign of a different metabolic disorder.
My daughter got diagnosed at 3 years of age and her condition results in her not being able to filter out excess ammonia (one of the things our body converts protein into). A build up of ammonia in the body can go to the brain and if left for long periods of time can cause coma, brain damage or even death.
Her condition is controlled by maintaining a restricted protein diet and by taking different medications.
I ran the dublin marathon in 2008 and raised funds for my daughters condition, We raised a considerable amount of money. We are currently liasing with parents, the metabolic unit in Temple St and climb in the UK to try and set up a similar organisation like Climb here in Ireland.
Climb have been of huge support, when your left in a situation where your child is diagnosed with a rare condition most peoples reaction is to look to the internet for information. Unfortunately for us this is exactly what we did, the information you get when you google “Urea Cycle OTC” is usually fairly grim. That is why when we discovered Climb it was such a help.
You were comfortable that the information and support was accurate, researched and trustworthy. They had first hand experiences to share and were always very giving of their time.
I recently attended a conference in the UK which was held by Climb. It is a conference they hold annually and it was great to meet other parents and some adults with the same condition as my daughter. These events are invaluable to us when you consider we have very little other interaction with parents and people living with this condition from one end of the year to the next.
Climb is a UK based organisation and I know there are charities closer to home that need our support in these times. But in the abscence of a similar organisation here this organisation benefits people here at home too. We need climb to be strong financially in order to be able to set up a base here or to support an organisation we set up and just to continue to support parents and people with this condition living in Ireland.
Please support my run by going to http://www.justgiving.com/Eoin-McGee and give whatever you can, I mean it when I say I don’t care how small the donation please just give what you can.
If you would prefer to pay in euro please email me and I will send you details of how you can do this email@example.com