Twins With SMA - Spinal Muscular Atrophy

spooky gaol visit is all in a good cause

2008-04-09T16:43:00.002Z

Sorry it's been a while since our last post.

After the relative quietness of Christmas, the fund raising is picking up again with our good friends organising her 40th birthday party as a night at Derby Gaol - read more by clicking here.

Also, Ian (the boys father) is making preperations for the Derby Fun Run.

Visit the website for full updates.

Twins make the Newspapers

2008-01-03T17:19:00.000Z

Sam and Alex were recently in the Derby Evening Telegraph newspaper showing off their new outdoor play equipment provided by the generous fund raising donations from past events. Sure to make a big difference to the boys lives.

Click here to read the full story

Skydiving Duo raise £3000 for Twins

2008-01-02T17:33:00.000Z

Sisters Charlotte Hunter and Zoe Crosby raised £3000 from their sponsored skydive in November. Many thanks go to both Charlotte and Zoe as well as all the kind people who sponsored them and the anonymous benefactor who donated £500 to pay for the event. - Click here to see the pictures

St Andrews Playgroup raised over £180 from their Round the Crib in December. Many thanks go to Mrs Elston and her staff, the children and parents at St Andrews and Paul the vicar.

Dimensions Workwear, Castle Donington (where Dad Ian works) held a raffle before Christmas raising over £200. In addition, the Customer Service Department raised £42 in lieu of sending Christmas cards to colleagues.

On Thursday 27th December a charity football match was held between "Shaun Bestwick Select 11" and "Wayne Hall Select 11" resulting in a 1-0 win to Shaun's team. Many thanks go to both teams, the spectators who braved the cold, Barry Elmore who refereed the game, Gemma for organising the raffle and Mel & Paul at The Park who welcomed everyone for a drink and a buffet. The total raised from the match and raffle was just under £300.

On Friday 28th December Sam and Alex went to Butterley Station in Ripley to visit and have a trip on Thomas the Tank Engine. This trip was kindly donated by "Me and Dee" (www.meanddee.co.uk). The boys enjoyed the trip and met and received gifts from The Fat Controller. Many thanks to Maria at Me and Dee.

Fund raising updates

2007-11-01T12:28:00.000Z

Hi - We have a number of fund raising events to update you on...

Derby Twins Club

On Friday 10th August, members of the Derby Twins Club took part in a sponsored "toddle/pushchair push" around Carsington Water to raise funds for Twins with SMA. There was a good turnout and the weather was beautiful and everyone stayed for a picnic afterwards. Many thanks to the twins club members that took part and their friends and families for sponsoring them. The total raised was £378!

Click here to see pictures and read more.

3km Sponsored Run

Kevin Troop successfully completed a 3km sponsored run and raised £100 in sponsor money. After being postponed twice through the summer due to bad weather the run eventually took place on Sunday 14th October at Darley Park.

Click here to see pictures and read more.

Sponsored Abseil

Sponsored Abseil on Saturday 20th October at Millers Dale was successfully completed by all those who took part. A particular thank you goes to Chris, Jo, Ben and Ludovic who collected nearly £700 in sponsor money.

Click here to see pictures and read more.

A Night to Remember

"A Night to Remember" on Saturday 20th October was a great success raising over £1200 from ticket sales and raffle tickets. Many thanks to Andy at Andy's Bar, Dragons Health Club, for allowing us to have the room and donating a raffle prize, Jackie Hind for the lovely buffet, Andy and Alex (Two's Company) and their special guests and the following generous people who donated raffle prizes - Andy Pears and his mum, Alex Kerr, Twycross Zoo, Soar Bridge Pub (Barrow on Soar), Bistro Live and Carl Abbott. A big thank you goes to all those people who bought tickets and joined the family on the night - a great time was had by all!!!

For details of all the fund raising events that are taking or have already taken place, please visit our website. Click here to see pictures and read more.

40th birthday abseil to raise funds for Twins

2007-10-17T12:34:00.000Z

40th birthday celebration includes raising money for Twins'

An ex-colleague of Sarah's from the University of Derby, Chris Allwright, decided to celebrate his 40th birthday this year by doing something memorable and this involved raising funds for twins with sma.

Chris, along with some friends and colleagues, will be abseiling from an old viaduct about half a mile north of the old Millers Dale Station. The event will be taking place this Saturday 20th October at approximately 2.30 pm.

If you would like to sponsor Chris, please contact him at c.j.allwright@derby.ac.uk

For more information, please visit twinswithsma.co.uk and click on events.

fund raising events update

2007-09-19T09:31:00.000Z

On Line Sports Auction

Several Premiership and Championship Football Clubs as well as Derbyshire Cricket Club donated memorabilia – signed shirts, photos, a cricket bat, stadium tour, match tickets and a signed pennant were sold online and raised just over £100. Many thanks to Derbyshire Cricket Club, Middlesbrough FC and Leicester City FC.

Sunday 16th September 2007 – Watercolour Exhibition/Sale

The exhibition held by the twins Grandma (Pat Wilson) raised just under £800. The day was a great success with Pat selling 39 of her 51 paintings. Money was also raised from the sale of postcards, greetings cards and prints as well as a raffle. Thank you to everyone who came and spent!!!

Monday 17th September 2007 – Evening of Mediumship

Tamworth Spiritualist Church held a special evening to raise funds for Sam and Alex and raised nearly £350. Many thanks to all those who attended as well as the special guests who gave their time free of charge. Particular thanks to Sonia Cherrington and Cindy Heath.

Forthcoming Events

Sarah’s friend Charlotte Hunter and her sister Zoe Crosby are taking part in a parachute jump in October (exact date to be confirmed) to raise funds for the boys. If you would like to sponsor either Charlotte or Zoe please email us to sponsor. Two brave ladies!!!!!

Evening of Mediumship - we will see you there

2007-08-29T11:07:00.000Z

Monday 17th September - Tamworth Spiritualist Church are holding an "Evening of Mediumship" with Jean Duncan and Friends on Monday 17th September 7.30pm. For tickets see the events page at www.twinswithsma.co.uk

Tickets are £5.00 or £6.00 on the door

Monies raised will go to the Twins With SMA Trust Fund.

Sporting memorabilia charity auction for twins on Ebay - 2 days left to bid

2007-08-29T10:58:00.000Z

****** Stop Press ******
Ebay Online Sports Auction - only a couple of days to go. Check out our items (signed shirt, tickets, stadium tours, signed photos, etc) at:
http://search.ebay.co.uk/_W0QQsassZtwinswithsma. Good luck and happy bidding.

Items include:
Blackburn Rovers signed shirt
Coventry City FC Tickets for 4 to any 07/08 home game
Leicester City FC stadium tour for 4
Portsmouth FC signed mouse mat
Everton FC signed photograph
Liverpool FC signed photograph
Middlesborough FC signed pennant
Derbyshire County Cricket Club signed bat

Remember all monies raised will go to the Twins' Trust Fund.

3 new fund raising events

2007-08-13T15:43:00.001Z

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.

................
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.

Golf challenge at Morley Hayes raises £220 for twins with SMA

2007-08-03T08:43:00.000Z

On Saturday July 21st a group of people came together to help generate funds for the Twins with SMA trust fund.

Michael Bolton, uncle to Sam and Alex (Twins with SMA) organised the event which took place at Morley Hayes Golf Club in Derby. An 19 strong party (Listed below) took part and paid fees to play 18 holes on the picturesque course and despite the weather being in doubt for most of the time the day turned out ok and a good time was had by all that took part.

Although there was a mild competitive nature to the game with prizes on offer for the ‘longest drive’ and ‘closest to the pin’ shots it was all played in fantastic spirits and even by the none golfers amongst the party who forgot that the fairway and greens were the target and not the long grass, water traps and bunkers had a frustrating but enjoyable day and all the way through no one forgot why they were actually there.

Everyone retired to the 19th hole for food and drinks where there was also a raffle that took place. Even people who had nothing to do with the party took part and reaped the rewards with prizes such as Beer, Wine and Spirits being donated by some of the players. Other prizes such as vouchers from Bliss (Beauty Salon) in Littleover were also won but the main prize, which was very kindly donated by our hosts at Morley Hayes, was a free round of golf for four, so a special thank you goes to them.

A total of £220 was raised by the event and Twins with SMA would like to thank everyone that took part and especially Uncle Michael for organising what turned out to be a fantastic and successful event.

Participants were : Nick Buchanan, Julian Brown, Wayne Clowes, Peter Haynes, Michael Gibb, Andrew Denton, Wayne Keenan, Paul Simmonds, Michael Bolton, Greg Gregory, Chris Todd, Shaun Bestwick, Richard Clarke, John Hargreaves, Wayne Hall, Ian Bolton, Rob McGuire, Grant Gibb, Keith Bass

For pictures of the event, click here to visit the Twins' website.

Brave Dad captured on film

2007-07-25T13:26:00.000Z

New picture of brave dad - Ian Bolton - before he set off on the Derby 10K fun run earlier in the year, posted on the Twins' website. He was running to raise funds for his twin boys, Sam and Alex who suffer from Spinal Muscular Atrophy.

Click here to visit the website and see the picture for yourself.

Unfortunately, we were unable to bring you a picture of Ian after he finished due to censorship by Ian "I was just plain worn out" he admitted but pleased to have finished and raised a lot of money for the Twins' trust fund which is going towards providing specialist equipment for them etc.

10K Fun Run amount announced

2007-07-09T14:56:00.000Z

Fund Raising Achievements So Far

*Evening Out*

Sam & Alex’s mum Sarah had a rare night out on Thursday 5th July where she met up with some ex work colleagues from the University of Derby. These very generous ladies donated a total of £130 towards the twinswithsma fund. Grateful thanks go to Jean, Lesley, Jeanette, Alison, Amanda, Charlotte and Claire.

*Sponsored 10k run*

The money has all finally been collected and counted and the grand total raised by Ian for his 10k run in April is £2439. Many thanks to all those people who generously sponsored Ian and especially the friends and family who took forms and got sponsorship on Ian’s behalf.

Bad Dad or Football Crazy?

2007-07-05T13:28:00.000Z

Votes have been taken and are being counted as we speak, looking for the new 'Bad Dad of the Year', and leading the way by miles is Ian Bolton, Dad of Sam and Alex (Twins with SMA).

On may the 28th, Sam and Alex turned 2, so as you would imagine, the whole family spent a lovely day together to celebrate the speacial occasion.... NO.... Not at all...

The soon to be crowned 'Bad Dad of the Year', Ian, spent his sons 2nd Birthday cheering Derby County on at Wembley in the 2006/07 Play Off Final against West Bromwich Albion.

Fortunately the Rams came away victors so the boys did not mind too much and as every Derby County Fan will know and understand, an occasion like that does not come around too many times. It was a day to remember for everyone that was involved, supporters and players alike.

Ian's only saving grace was the fantastic party that was held at Sam and Alex's home on the 27th May where friends and family came to celebrate their special day.

Sam and Alex are looking forward to Derby County's forthcoming season in the Premiership and would like to take this opportunity to wish Billy Davies and all his players good luck for their campaign, they are also hoping that at some stage this year they might be able to lead out 'the rams' at one of their home fixtures.
If that happens you will hear about it here first on the Twins with SMA website and Blog

COME ON U RAMS.

Derbyshire County Cricket squad knock twins for six

2007-07-04T14:46:00.000Z

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

2007-07-04T14:44:00.000Z

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.

Are your kids becoming telly addicts?

2007-06-26T08:07:00.000Z

Sam and Alex are now 2 years old and due to the lack of mobility that they experience compared to more active children of their age they have found a new love.... DEAL or NO DEAL. They can't get enough of it... and if you try turning it off then you are seriously jeopardising your own security.

I can't see the appeal myself but it is probably the simplicity of it that attracts.
Apart from this they also love all the usual kids programmes like Bob the Builder, Teletubbies, The Tweenies, Wonder Pets, Big Cook Little Cook and more recently the phenomenon that is Roary the Racing Car.

People are often critical about letting their children watch TV at such a tender age but we feel that as well as offering them learning through play and reading they also develop through watching some of these programmes, for example. Sam was watching the teletubbies last week and started to count along with them at the beginning when they are being introduced. We also, on occasion, find both of them singing along to the themes.

Although we do not agree with plonking children in front of the TV while you go off and do your thing we do think that Children, like adults, need some chill out time. A chance to just put their feet up in front of the box and watch something they enjoy.

Sam and Alex have their own website - www.twinswithsma.co.uk. Why not visit and find out more about them, their families efforts to raise much needed funds or gain help and support if you or someone you know is suffering from Spinal Muscular Atrophy.

Twins With SMA now on Technorati

2007-06-13T15:04:00.000Z

Technorati Profile

Twins holiday on Isle of Wight

2007-06-11T13:51:00.000Z

Just thought you'd like to know that the twins are back from a weeks holiday with Mum and Dad on the Isle of Wight.

Staying near Newport, the sun shone and a great time was had by all.

Dad reported the only problem was towards the end of the week when their stay coincided with the Isle of Wight Festival and half the roads in Newport were diverted or closed.

Nice to have you back guys!

Last time I stayed on the Isle of Wight, coming home there was a ferry breakdown and the remaning ferry had been chugging back and forth all day. Just before early evening, and after a day spent queing from one field to another, we were about to drive on when we all had to get off.

The crew had just discovered the ferry had a hydraulic floor so it could be raised and another floor load driven on underneath!

It was late by the time we got to the mainland and we ended up staying the night in a B&B in Lymington.

Bookmark your favourite article - made easy

2007-06-07T09:20:00.000Z

Now you can use the 'Add to' buttons at the bottom of each post to submit/save your favourite articles directly to your favourite social bookmarking site.

We've included four of the most popular - Digg, Del.icio.us, Reddit and SlashDot.

Alternatively, you can use the Socializer - social bookmark this Blog link at the top of this page which will allow you to bookmark this Blog to over 40 top social bookmarking sites, for you to share with others.

Thank you for bookmarking those stories and articles that interest you.

Twins With SMA

Happy 2nd Birthday Sam and Alex!

2007-05-30T16:30:00.000Z

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.

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

2007-05-29T13:21:00.000Z

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.

Confirmed fund raising events update

2007-05-22T19:17:00.000Z

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 ideas@twinswithsma.co.uk . 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

2007-05-22T19:15:00.000Z

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 !!

Fund raising achievements so far for Twins with SMA

2007-05-14T13:23:00.000Z

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

2007-05-14T13:17:00.000Z

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

SMA - the facts.

2007-05-10T07:19:00.000Z

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

2007-05-08T10:24:00.000Z

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

2007-05-04T15:27:00.000Z

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.