Hi,

This little man is called Alex. In July last year he was diagnosed with a rare genetic disease Called SMA Type two.

SMA is a muscle wasting disorder and over time your body starts to lose strength. In the past few months we have seen Alex lose the ability to stand unassisted and he has really started to struggle with his crawling and sitting; he is only two and a half.

What this means for Alex in the future is that he will lose the ability to move his legs and lower body and he will have a severely weakened core and arms. As time goes on Alex will develop problems swallowing and breathing and he is going to need lots of help.

We had a great first year with Alex where he hit all his mile stones with flying colours and we celebrated all of them. Since he was one year old we have had to watch our little man gradually lose these mile stones one at a time and it is the most heart-breaking thing you could have to watch, knowing there is nothing that can be done about it.

Over the next couple of years we are hoping that Team Alex will take on many different challenges for Alex’s cause! We are trying to raise some funds to make his difficult little life as easy as possible in the future.

Over his lifetime he is going to need lots of equipment and aids; some are supplied by the NHS (sparingly and with long waiting lists) and others will not be available at all. He will need special beds, bathroom equipment and specialist medical equipment including stat machines and C02 Trackers. He will also need mobility aids and specialised wheel chairs.

The list is endless and it totals up to tens of thousands of pounds.

I hope you can find it in your hearts to donate towards his cause, every little helps!