Thursday, April 18, 2013


I don't know if you have noticed but we are losing a lot of followers from the Twitter account. Overall the number is increasing but there can be days when we lose over 100 followers as we gain new ones. For a while this upset me then I had a Direct Message from one of our followers who explained that they were leaving now because they 'were not needed any more.'

Then I got it.

There  were people thinking that since the birth of Cristina on 20th February we no longer needed help with grieving - we were posting pictures of her and sounding far happier and people were thinking that it was time to go.

They are right in one way. I have certainly been tweeting far less and Maria and I could not be happier with our new life. Cristina is not only healthy, she is beautiful, bright and highly entertaining.

Just because we now have Cristina though does not mean we have forgotten about Estella and our promise to SMASH SMA. I have always said that this was not about us it was about raising awareness of this disease and doing all we can to make sure that YOU and other parents don't go through what we did. That is Estella's legacy.

Things have gone quiet but we are just regrouping thoughts and ideas - at the moment

We are organising a literature convention on July 6 and 7 at the New York Stadium in Rotherham. Its based around the works of American writer and poet Jack Kerouac and all proceeds will go to Tom Gillingwater's SMA research. Even if you have never heard of Kerouac there's a concert, a film, a play , a party and a great opportunity to meet Maria and me - and to help towards SMA research. There's more details at or follow the twitter account @kerouacbeats

We are still awaiting more news on the political side. Norman Lamb and Nick Clegg are pushing the screening consultation and new MP Sarah Champion is also promoting our cause.

The Jennifer Trust have announced that they are now supporting Tom Gillingwater

We are getting great celebrity support with daily messages from Lauren Carre who has been a great follower

Wrist bands are still selling to raise funds.

To be very clear - we still need your support because the campaign is now about making sure that this disease is seeing its last days. So if we look happy - we are - but that doesn't mean that every single day there are not new babies diagnosed with SMA - and that's what we want to stop.

Cristina had her 8 week check up on Monday.
Last time we had an 8 weeks check up was the day they diagnosed Estella and our world ended.

She passed with flying colours.

Please stay - we need you 

1 comment:

  1. Social Media Exchange
    Thanks for sharing the idea there would be some apprehensions from segment but i am up for it.