Wednesday, 30 May 2007

Happy 2nd Birthday Sam and Alex!

Sam and Alex Bolton celebrated their 2nd birthday on Bank Holiday Monday at home with friends at a party.

If someone you know has got a birthday coming up, don't forget if you order a personalised photo gift for them from Fabulous Photo Gifts, submit our Funds for Life scheme code and your purchase will donate 5% to the Twins fund.

Thank you.

Tuesday, 29 May 2007

Now you can raise 'Funds for Life' for Twins With SMA

Twins With SMA now participates in a new fund raising iniative from Fabulous Photo Gifts.

Called 'Funds for Life', it simply means that everytime you purchase a personalised photo gift - a jigsaw, a CD Clock or anything else from their ever growing range of gift ideas, if you enter our unique code on the home page before starting your purchase, Fabulous Photo Gifts will donate 5% of the basket total to Twins With SMA.

And the best bit is it's not restricted to just one purchase! Just use the code for your next purchase and they'll donate another 5%! It's so simple we thought it was brilliant.

Remember to tell your family and friends too - the next time they need a gift idea, just by buying from Fabulous Photo Gifts, means they'll have donated too.

If you're involved with a school fund raising, club, team or charity and you'd like your own 'good cause' to participate in Fabulous Photo Gifts unique fund-raising scheme, then click here to read more, or visit our home page and make a note of our unique number for your next order.

Tuesday, 22 May 2007

Confirmed fund raising events update

The staff of Derby University are holding a ‘Dress Down Day’ and a ‘second hand book sale’ which takes place on the 25th May at the Kedleston Road site. The books have been donated by and are being sold to members of staff at the campus and all funds are kindly being donated to the ‘Twins with SMA’ charitable trust fund. Information on the results of the day will be posted on the ‘Achievements so far’ page.

There has been a lot of interest shown in the Charity Poker night which is to be held in the not too distant future. A brief appeal goes out to anyone that may be reading this and know of either a public house, social club or function room that holds regular poker nights and may be able to provide the adequate facilities, ie, tables, chips, dealers etc that will help put the event together to make it possible then it would be appreciated if you could contact us at . As the focus is on generating funds we are trying to organise the event with minimal outgoings. Any suggestions would be welcomed.

Twins with SMA have recently written to all Premiership and Championship football clubs in order to obtain donations of memorabilia and merchandise to be put towards a Charity Sports Auction which will take place as soon as we have received responses from all clubs. More details of the items and dates will be provided soon.

For more information, visit the twinswithsma website.

Charity football match raises £243

On Sunday 13th May a Charity Football game took place on The Manor (Park Road) in Belper. A friend of the Bolton family, Shaun Bestwick, used his connections and resources to organise quickly what turned out to be a really successful event.

The players came from the current Bargate Rovers side who pitched their youth and fitness against the age and experience of a Belper Parks league and cup winning side of 5 years ago. Unfortunately youth was the victor on the pitch with Bargate coming away 3 – 2 winners and the Belper Parks boys have vowed revenge in a rematch but the real winners of the day was ‘Twins with SMA’ who were the recipients of £243 generated from the players subs, a raffle and various pub games.

Hopefully the game will become an annual event and full details will be posted on this site. A huge thanks goes to Shaun and his partner Gemma for organising the event and also to Paul Buntin and wife Mel, the licensees of ‘The Park’ pub of Park Road, Belper for allowing all the players to return for food and drinks after the match.

Also not forgetting every player that took time out on what was an absolutely awful day weather wise to come and take part in the event and all those that fought the elements just to watch... Hope you’re there for the rematch !!

Monday, 14 May 2007

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.

Up and coming SMA fund raising events for Sam and Alex Bolton

Up and coming events.

Family, friends and colleagues of Sarah and Ian, Sam and Alex’s parents, have been digging deep into the ideas box and some of the following events are proposed but as yet times and dates are to be confirmed.

Confirmed events

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.

Proposed events

A sponsored Parachute Jump
A fundraising Poker night
A sponsored ‘Wear you PJ’s to school’ day
A fundraising Cheese and Wine party
A fundraising Coffee Morning

If you have any fundraising ideas or wish to organise an event for ‘Twins with SMA’ then please contact us at our website

Thursday, 10 May 2007

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?

Tuesday, 8 May 2007

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 Why not pay them a visit now?

Friday, 4 May 2007

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 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.