3 new fund raising events

Three new fund raising events we'd like to bring to your attention:

Saturday 20th October 2007, 7pm - Social Evening at Dragons Health Club in Derby. Tickets are £10 each - please contact Sarah for tickets via the Twins website (click here). Entry is with prior purchase of ticket only as we are not able to sell tickets on the door. The evening will consist of a disco, buffet, raffle, quiz and entertainment.

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Sunday 30th September - A friend of the family, Julie Watkins, is looking for willing sponsors as she takes part in the BUPA Great North Run on Sunday 30th September 2007. The run covers 21 kilometres and, as usual thousands of fundraisers and celebrities are due to take part. If you would like to sponsor Julie for this event then please use the ‘Contact Us’ page to supply your details and donation/sponsorship.

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Sunday 16th September - Art Exhibition & Sale by the twins Grandma, Pat Wilson. For further details click here.

All these events are raising funds for the Twins trust fund, to provide specialist equipment for the boys now and when they're older.

Derbyshire County Cricket squad knock twins for six

Derbyshire CCC, doing it for the boys.

Twins with SMA would like to offer a massive thank you to Keith Loring and everyone at Derbyshire County Cricket Club for their kind donation of a signed cricket bat signed by all the players from this years squad.

The Bat will be used in a charity auction to take place online, details of which will be posted on the site soon.

Thank you again and we wish you all the success for the rest of the season.

University dress raises staggering amount

University dress down for the occasion


On Friday May 25th the Student Support and Information Services department at Derby University’s Kedleston Road campus held a book sale and dress down day to raise money for Twins with SMA.

Staff from the whole site donated books which were sold raising approximately £600. In addition, members of staff within SSIS paid a fee to “dress down” for the day making a total raised of £670.

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Twins With SMA

Fund raising achievements so far for Twins with SMA

Achievements so far …..

Please check this page regularly to find out what funds and awareness have been generated for Twins with SMA.

Sam and Alex’s father, Ian, took part in the Derby 10k run on Sunday 29th April 2007. He finished the course in a steady but respectable 1 hour and 9 minutes. Funds generated from this event are still being collected and counted but it is hoped that he has generated around £1000 towards the ‘Twins with SMA’ trust fund. Ian would like to say a huge thank you to everyone that was generous enough to sponsor him and donate funds toward the cause. A list of all sponsors will be detailed on this website very soon.


Several people where generous enough to donate items to go towards a car boot sale which took place at Measham Car Boot on Sunday 15th April 2007. The total amount raised from this was £85.30 and most but not all items where sold. It is now the intention to use the remaining items to do another car boot sale very soon.


The pupils of tutor group 7-3 (The Tigers) at Hartshill School in Nuneaton dug deep and donated all the small change that they had in their pockets on Wednesday 28th March. After all the monies were counted the grand total raised came to a fantastic £29.30 so a big, big thanks goes to all concerned.

SMA - the facts.

What is spinal muscular atrophy?
Spinal Muscular Atrophy (SMA) is a neuromuscular condition causing weakness of the muscles.

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.

What Happens in SMA?
In SMA, it is the anterior horn cell, which is abnormal. Not all nerve impulses can be passed from the brain to the muscles. This results in some of the muscles becoming weak and wasted (atrophied).

All of the above details have been taken with permission from the Jennifer Trust website, the UK’s only existing website driven towards Spinal Muscular Atrophy.

For more information, why not visit the Twins with SMA website?

Sam and Alex - the story so far

The story so far.

Allow us to introduce you to two very beautiful and very special boys Sam (Left) and Alex (Right).

The beautiful bit is obvious, just look at the picture above. The special? Here’s why!

To look at this picture you see two happy, smiley little boys but beneath the exterior there is something happening to them that is not only rare, but also incurable.

Imagine the joy of Sarah Wilson (Mother) and Ian Bolton (Father) in December 2004 when they were told at a 10 week scan that they were expecting twins. At 20 weeks they discovered that they were identical boys and they were finally born 7 weeks early in May 2005. Although they were fit and healthy they spent 3 weeks in the Special Care Baby Unit at Derby City General Hospital.

The early part of their lives allowed them to grow and be as active as any normal child might. They could role, bear weight on their arm and lift their heads to a comfortable position to allow them to be inquisitive like all babies. Then came the blow.

Imagine the devastation when in November 2006 Sam and Alex were diagnosed with a condition known as SMA (Spinal Muscular Atrophy) something which at the time their parents had never heard of. SMA is a nerve wasting disease that comes in several stages and Sam and Alex have Type 2.

When Sarah and Ian were told exactly what this disease was and how it would affect the rest of their lives, their whole world fell apart in an instant. They were told in one afternoon that their only children will never be able to stand, walk, or even sit up by themselves. They will have movement of their limbs for a short period of time but this will eventually wear away. Their condition will continue to deteriorate and this will eventually lead to the worst case scenario - they may not live past childhood. At some point, the deterioration of the condition will reach a plateau and this will give their consultant a better idea of the severity of the disease, however there is no way of knowing when this will be – it could be next week, next month or next year ……

Since the diagnosis there have been slight changes to their physical ability – Sam can no longer roll over and both boys need more support with sitting. However, they have continued to develop mentally and their speech continues to develop as with normal 2 year old children. They enjoy singing and being read to, playing with their toys – particular Thomas the Tank Engine – and love watching Teletubbies on TV. To prevent them from being in one seating position all the time, they have some time lying on the floor with soft toys or laughing at the family cat, sitting in their highchairs to eat meals and using their powered chair to get themselves around although this is still a new experience for them and the furniture!!!

At the moment the family’s lives are taken up with appointments and at the moment they see a physiotherapist, an occupational therapist, a portage worker, specialist health visitor, a consultant, an educational support worker and an educational psychologist. As well as a Health Worker they also have a team of specialist nurses available should Sam and Alex fall ill.

Currently, the boys have special seating at home and at nursery, a joystick operated powered chair, special bath seats and in the near future will probably need a more suitable pushchair and a huge range of specialist equipment.

As they continue to grow and gradually become heavier this is affecting their ability to be active which is frustrating for 2 children who at this stage of their lives should be toddling round the garden and running off in supermarkets.

There will be frequent updates regarding Sam and Alex’s progress on their own web site at www.twinswithsma.co.uk. Why not pay them a visit now?

Twins With SMA - Spinal Muscular Atrophy website launch

Hi and welcome to the Twins With SMA Blog

We'll be updating you with news, fund raising events (and their outcomes) as well as bringing together articles and news for and from SMA (Spinal Muscular Atrophy) sufferers.

Twins With SMA .co.uk follows the fund raising efforts for two very special twins - Sam and Alex who have been diagnosed as suffering from SMA (Type 2).

We look forward to welcoming you to our new website which has been put together and is being maintained with the generous help of Home Improvement Quotes - instant online quotes for home improvement projects like double glazing, and Fabulous Photo Gifts - personalised photo gifts - specialists in photo jigsaws and CD clocks.

Please visit again soon.