As a parent of special needs children, I know just how tiring and demanding filling the needs of our children, earning some money, and doing a spot of volunteering here and there can be.
Ann Maxwell took that to an entirely new level.
Ann’s son, Muir, was diagnosed with Dravet Syndrome which is a very rare form of epilepsy that causes profound learning difficulties, behaviour problems and severe developmental delay.
Muir was 10 before he was fully diagnosed and in special needs terms, that is late. I can empathise with the difficulties of late diagnosis on the potential outcomes for children, but there is usually very little that we can do about it.
Instead of focussing on her own situation, Ann got out there and decided that she was going to help other families get the diagnosis and help that they needed.
Nothing was going to stop Ann, and she set up the Muir Maxwell Trust in 2003. By using DNA testing with results run by the NHS, children are tested and diagnosed in 40 days. No more waiting for years to get treatment.
Ann did all of this while also being diagnosed with bone cancer in her skull in 2006. After several operations, she kept going with her work and up to now, the trust has raised an amazing £7 million.
I’ll let her describe what she’s done in her own words:
‘Every project that we’ve launched has been based on the experience of raising Muir. We’ve recognised where there is a need and launched a project to meet that need. Then we find someone to continue with the project so that it has a permanent place in terms of delivery but is not one that we have to fund indefinitely. We’ve found all sorts of partners, from the NHS and government to other charities. The point of the trust is to provide practical support to try and make the lives of families dealing with epilepsy better.’
I can understand how Ann feels when she talks about waving a magic wand that would allow Muir to be a normal child. I think it’s something that most special needs parents wish and why we often go looking for ways we can make a difference to their lives.
The Tesco Mum of the Year awards celebrate women who have made a real difference to the lives of others. As the winner or Charitable Mum of the Year 2013, Anne’s sheer determination to improve lives of other children in the UK while dealing with her own family issues is an inspiration, and makes her a very deserving winner for the official ceremony in March..
Find out more about Ann on the website, and make a note to nominate an extraordinary mum next year.
This year, for the first time, the Tesco Mum of the Year Awards Ceremony will be broadcast on Channel 5. The Mum of the Year winners will be at the Savoy in London on the 3rd of March with many celebrity guests. On Mother’s day, Sunday the 10th of March, we can all tune in to watch their stories.
Being asked to be an official blogger for the Tesco Mum of the Year Awards 2013 has been an honour and I hope they all have a wonderful time at the Awards Ceremony.