LUCAS WAS HERE! Is me Anthony and my friends Dan and Danielle, cycling over 1000 miles from Hanoi to Ho Chi Minh City in Vietnam, putting up posters of Lucas along the way, wherever we can or indeed are allowed (maybe even some places we aren't!) to raise awareness and of course as much money as possible for the incredible charity 'The Jennifer Trust' who have helped all Lucas' family immeasurably in the process of coming to terms with the terminal illness that once was completely unknown to us, and most likely yourself, throughout his inevitable and gradual demise.
The idea was born from a discussion I had with my sister where she said to me that it hurts her more to know that Lucas will never have a chance to get out into the world. So I decided I would take him there, in spirit and print admittedly, but I hope that it is a cathartic aid to my sister and family to let them see Lucas' face out there in the world.
So why Vietnam? I hear you thinking. Well that's an easy one... why not.
I have personally always wanted to go and maybe slightly selfishly thought i'd combine the two things, there is also the fact that is not exactly your normal cycle route now is it? 90% humidity, 35 degrees and rather mountainous in parts.
We will be keeping a diary here throughout the journey so please keep checking back to follow just how we are getting on....
The journey begins on the 1st of December and we hope to reach Ho Chi Minh around the 30th of December
So GODSPEED... keep your eyes peeled for Lucas....he may just be anywhere.....
And DON'T FORGET TO SPONSOR US
This information is copyright of the Jennifer Trust for more information please visit their website www.jtsma.co.uk
What is it?
Spinal muscular atrophy (SMA) is a condition that affects the nerves in an area of the spinal cord called the anterior horn. These nerve cells become damaged, breaking the link between the brain and the muscles. As a result, the muscles can't be used and become wasted or atrophied.
Is SMA Hereditary?
The gene for SMA is passed from parents to their children, but SMA can only affect a child if both parents carry a defective gene (this is called an autosomal recessive pattern). Genes come in pairs, one from each parent. If a person has one normal and one affected gene they do not show the symptoms of SMA but are carriers. If both genes are affected they will have SMA.
How Spinal Muscular Atrophy is Inherited.
Each child of carrier parents has a 1 in 4 chance of being affected by SMA, a 2 in 4 chance of being a carrier themselves, and a 1 in 4 chance of being completely clear of SMA. Boys and girls are affected equally.
Is There More Than One Type SMA?
There are several types of SMA. These differ in the age at which they have an obvious effect, how severe this effect is, and which muscles are most affected. The intermediate form described here starts in infancy. However, it does not have such a severe effect as Werdnig-Hoffmann Syndrome with which it is sometimes confused.
Types of SMA
All ages of onset are approximate
| Type 1 (Severe) | Also known as Werdnig-Hoffman Syndrome. Onset before or shortly after birth. Unable to sit. Do not usually survive past 2 years old. |
| Type II (Intermediate) | Onset between 3 months and 2 years. Able to sit, but not stand without aid. Survival into adulthood possible. |
| Type III (Mild) | Also known as Kugelberg-Welander Disease. Onset usually around 2 years. Able to walk. Normal lifespan. |
| Adult Onset SMA | Number of forms differing in age of onset. Degree of weakness is variable. |
How do Normal Muscles Work?
Muscles contract, moving parts of the body, when signals from the brain pass down the spinal cord through the anterior horn cells. Each anterior horn cell is responsible for passing a signal down another nerve to a muscle. The group of structures made up by one anterior horn cell, the nerve fibre and the muscle it supplies, is known as a motor unit (see diagram).
