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

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?