A lot of people in Kirkby will have heard about the young baby Conor in Huyton who was recently flown to see a specialist in Spinal Muscular Atrophy (SMA) in the USA. The issue was initially raised on another local website Huyton Times and word spread fast once the story was publicised. This shows how vital local websites can be. We can make a difference as well as just report on issues.

The people of Huyton, like the people of Kirkby, are generous when we are called on to help our own people, and helping little Conner was something that had to done right away. Spinal Muscular Atrophy is the No 1 genetic killer of children under the age of 2 years old and whilst you are likely ignorant of the matter right now, the family and friends of young Conor had to learn fast. I would ask anyone reading this who has a bit of spare time to browse through some of the links at the bottom. One Website called SMA Angels was set up by a mum, Michelle Clancy, who lost her two babies to SMA and described her predicament as follows…… "SMA Angels was founded in 1996 when Werdnig-Hoffman took the life of my son Cody, and left me with a broken heart and searching for answers." A glimpse through that website will leave you, as it left me, moved by the courage and determination of a woman who has fought on for all those babies who are born with SMA. As of yet, there is no cure and the actual research seems miniscule and poorly funded by the Government.

All the readers of Kirkby Times will be thinking of Conor and if there is still a need to fundraise or our help is needed, I know Kirkby would always do the right thing in times like this. You can contact Conors family through Huyton Times and read more of the efforts there to help out. Below we republish the Huyton Times article which first broke the news………..

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Hello! you don't know me, but hopefully when you hear my story, you will want to know me and try to help me out in some small way.

My name is Conor Durkin-O'Brien and I live in Huyton, Liverpool, in the United Kingdom, I was 4 months old on October 4th 2003.

On Monday 22nd September 2003, my Mummy (Julianne), Daddy (Phil) and my families' world fell apart. The reason for this was that I was diagnosed with SMA Type 1. None of them had heard of this, and everyone was asking, "What is this?"

Spinal Muscular Atrophy Type 1 (also known as Werdnig Hoffman Syndrome) is a hereditary condition causing weakness of the muscles, it is onset shortly before or after birth and babies with this condition do not usually survive past two years old, approximately 80% die before they are twelve months old.

Unfortunately, this is the type I have and there is no known cure. Yet it kills more babies in the world than any other genetic condition. One in forty of us are carriers, that's 1½ million in the United Kingdom alone.

Since my diagnosis, my family have painstakingly searched for information on ways to help me, as well as the thousands of other babies all over the world.

We have found that American scientists are leading the field in research into this terrible condition, and that there may be a possibility that they could help me, as my family would like to have me around for many years to come.

Dr John Bach is a pulmonary specialist in the U.S.A, and my family are appealing to him in the hope that I may visit Dr Bach to see if he can help me, but I would need help financially, in order to do this. If you could help me in any way, please contact my family, I would be forever grateful.

Thankyou - Conor

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Families of SMA was founded in 1984 for the purpose of raising funds to promote research to find a cure for the Spinal Muscular Atrophies, and to support families affected by SMA (more here)

Lots of links here on the Health Nexus website...... (more here)

Thanks to The Huyton Times for use of story and photos www.huytontimes.com You can contact conors family there and keep up with the latest news.

Very best of luck to Conors Parents Juliane and Phil and all their family and freinds, especially those who helped raise funds and those who donated them.

"My name is Laura Stants, and up to 1995 I had never even touched a computer beyond Word Processing. Then in the fall of 1998, my four month old son Devon was diagnosed with a terminal illness-Spinal Muscular Atrophy Type I. The doctors had to look it up in a book. No-one had ever heard of it or what I was supposed to do about it. So I hit the greatest invention to date: the Internet! In my searches I found a lot of medical information -but that's it. I only found one page of a family in a similar situation as ours, but other than that, very little personal information. The medical information helped me a great deal understanding the disease, but it didn't help my spirit. We felt completely alone out there with a disease that nobody had ever even heard of. I found a guestbook to write in on, and that helped a great deal." (more here SMA Angels)