Thursday, March 29, 2012


We went off to Edinburgh over the weekend to meet with the team who are working on SMA at the University there. The team is led by Tom Gillingwater. You may have seen recent news stories about the success they have been having with their SMA work on mice.

That's Tom and the team in the anatomy section of the University.

They could not have made us more welcome and our discussions managed to cement a few ideas that we have been having about the whole SMASH SMA campaign.

Since the start we have never been concerned with raising anything but awareness and we have had some success in that area. There was never any intention to use Estella's life and her experience as a fund raising opportunity. That's an OK path for some - but its not us.

Discussions with Tom though showed the reality of research into SMA in this country. He has to spend a great deal of his time applying for grants from a variety of sources , mainly charites , to keep the research going. A couple of charities have funded the team for this year but funding is transitional and they are already having to wonder where to get funds from next year.

Let's get some perspective here.

This is a lab that is working on curing the number one genetic killer of babies in the UK
This is a lab that is working on curing a disease that 1 in 40 of you carry
This is the lab that has started to set the standard for genetic research into SMA and have created world news with their outcomes.

The total amount they need for their research ?

£ 100,000

Because of this one of the prime aims of our campaign will now be to highlight the work that is taking place here in the UK and to try to do all we can to make sure that the lab is funded for the next couple of years.

We have daily requests from people who want to raise money to help raise awareness of SMA and to help find a cure. We will now point all of those people in the direction of this amazing team and of the charity, The Jennifer Trust.

Why ?

While we were there the team let us look down microscopes.

We saw SMA.

 We saw the disease that took away Estella's breath and her movement and her life. We saw nerve endings that had broken down we saw illuminated and multicolured chaos and devastating decay. We saw into the microworld and marvelled at the illuminated horror of the disease that took our daughter.

If you have ever seen such microscopic back lit cells you will know that the closest thing they resemble is images that we see of galaxies and nebula systems. The similarity between the smallest things we can see and the largest is striking. looking down a microscope at the detailed landsape of SMA was so like seeing the Hubble Telescope visions of our Universe that we can never take for granted.

It was that realisation that made me think of Estella.

The smallest faults in the tiniest connections in that small delicate body became as significant and as immense as the gaps between stars.

Messages sent out through space that take light years to find their way home still arrive wheras the messages in Estella's body that asked her muscles to respond broke down.

 Lost signals. Cries in the dark.

There before our eyes were the gaps in communication that meant that I never got to hear my daughter's voice. There before our eyes were the bridges that could not be crossed that meant we spent her first birthday staring at the stars in the sky. There before our eyes was a puzzle as old as time that took the life of a girl as young as Spring.

And there we were with a man and some wonderful people who devote their time to asking the very simple question. Why ?

The same question we asked in those dark horrendous rooms last year, the same question we asked pushing her through gardens where she would never play and laugh and the same question we asked as we watched the balloons float into the sky on the day we said goodbye. Why ?

A small thing that can be seen down a microscope can be as immense and monumental as the greatest Universe. The smallest fault in our daughter's genetic make up , cruel and random coding blips from our own DNA and she was born to spend a brief time with us and then to leave far too soon.

She's up there now in those stars. She's down there in the slides beneath the microscope. We know that. She is everywhere our eyes can see and everywhere our minds can roam. The Universe is immense and we are illuminated by the breath of stars. The Universe is quantum and microscopic and we are in awe of the smallest wonderments.


Why have we decided to support the work that is taking place at Edinburgh University in the lab run by Tom Gillingwater ?

We decided because when we were sat in his office we noticed the drawings on the wall. We noticed the photo on his desk. We noticed tthat this guy was a Dad. We noticed that he was giving us four hours of his time. We noticed that he was proud of his team. We noticed that he was passionate about telling us that he thought we were doing a good job raising the awareness of SMA

And then it became rather delightfuly simple

We trust this guy to come up with a drug that will mean that SMA1 is no longer the number one genetic killer of children.

The biggest thing in our Universe becomes the smallest and most simple thing. I saw what they were doing. I heard about the changes they had already made. I saw how dedicated, professional, cost-effective and driven they were. I saw SMA being SMASHED. Literaly.

I like the idea of people being able to donate directly to the team and they have set up this link. The link tells you more about their work before you decide whether to donate or not.

For an example of recent press coverage of work from the Gillingwater and Parson research groups see: For an independent NHS report on Edinburgh SMA research, see:

So that was our trip to Edinburgh.

If you can help in any way then we are grateful.
Send this article on to everyone you think may be able to make a difference.

It does not matter if its 15,000 Twitter followers fiving £ 7 each or a political party realising that something radical and magical is happening in this country or a footballer who decides to pay the whole amount as a one off act of random kindness.

All that matters is that we do what we can to fund this research.

last thing from our visit

We met a critter while we were outside Tom's office thagt I think Estella would have smiled at.

Here it is

Gotta love these Science types !!

We promised our daughter that we would do all we could to SMASH SMA.

Thankyou to Tom and his exceptional team for giving us hope.

Somewhere in those University corridors there's a twinkle of starlight and the echo of Tinker laughing.

She was only a small thing
She was only our Universe


  1. Makes me proud to be British! =') Can you study genetics at this University? It's something I'd love to do when I'm older for this exact reason. All my love
    Kate Snape xxx

  2. As you say the Universe is so large, just like your love for Estella, and the fight you have in your hands. I wish Tom everything he wished for and I hope that all he does brings comfort to all. Thank you for sharing this with us all. xx #SMASHSMA

  3. This is beautiful.