Allow us to introduce you to two very beautiful and very
special boys Sam (Left) and Alex (Right).
"who say's men are no good at shopping"
The beautiful bit is obvious, just look at the picture. The special?
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.
"Sam and Alex at 3 weeks old"
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 roll, 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
However, they have continued to develop mentally and their speech continues
to develop as with normal 2 year old children.
"Sam, Alex and the Fat Controller"
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
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 this