SMASHING SMA - GREAT NEWS

Those of you who follow the Twitter feed (@estellastar1) will be familiar with the discussions that we have had with the SMA milk company.

For those of you who do not know SMA milk is marketed in the UK. Although there are no links between the product and Spinal Muscular Atrophy (SMA) we had raised the issue that we found their advertising very upsetting once Estella had been diagnosed with this disease.

There we were - newly diagnosed with a  disease that meant certain death and trying to deal with a  myriad of emotions only to see that there were adverts everywhere as a constant reminder of SMA. And what was worse these were adverts for a baby product containing healthy children who would grow and walk and run and ...live.

We raised the matter with the SMA milk parent company and to be honest were concerned with their initial response. Although they were aware of the disease they were not prepared to do anything about it:. We pressed the matter and a meeting was set up between ourselves and two representatives of the company-

That meeting took place for an hour this morning.

And it´s all good news

We had a conference with European Medical Director Dr Arun Mistry and The Head of Stakeholder Engagement Judith Luker

Here are the headlines

• The company say that it would be very difficult for them to change their name as they have such a well established product that was named well before SMA the disease was discovered. We achnowledged this but mentioned the example of AIDS slimming bars that changed their name after possible identification with the HIV virus.
• They acjnowledged that it would be hurtful for parents to see SMA products being advertised. They were very understanding and clearly touched by Estella´s story. This was very genuine
• They had decided to make a donation of 25,000 pounds to the Jennifer Trust group to help fight SMA. They said that they had contacted the hroup and made this clear that this was due to the feelings that our story had stirred. We are very grateful for this. We accepted this in the spirit it was intended
• They listened to other ideas we had regarding the promotion of SMA awareness. Our take on this is very simple. It can not be good for them to have a name associated with a disease that kills babies. If they do not want to change their name then it stands to reason they would benefit greatly from ensuring that SMA, the disease, did not exist.They stand a very good chance of being part of the solution to this terrible disease.One suggestion that we made was a small donation to SMA research for every item they sell.

It was a very positive meeting. I want to be clear that while Estella was alive she enjoyed SMA milk. It was  a great product and it helped prolong her life. There is nothing wrong with the milk. The unfortunate co-incidence is in name only. I believe that if the SMA company tried they could do a lot to bring awareness of the diesase through to people to prevent babies being born with SMA . and they can bring the cure date forward significantly.

For these reasons we have decided it is best to work as closely as possible with the company. They were not the faceless multi nationals we had expected. They listened and they responded. They have gone away to speak to their marketing people and whoever else they need to meet with. They will come back in the new year when we will meet again to see if there is anything more that can be done.

This isn´t just goiing to go away

but

What if..a multinational comapny really do have a heart and work with parents to do something about SMA? What if they acknowledge that they are in a position to make a difference to the 1 in 40 people who carry this awful disease? What if they become the solution ? How good would that be ?

They were absolutely brilliant today and I have great hopes for a working relationship that will truly honour Estella and her short life.

For now - let´s put down our weapons and achnowledge the fact that this was far better than I had hoped for teh 25k to teh Jennifer Trust is a sign of goodwill and an acknowledgement that they care.

I think we should be prepared to listen and to work together. They are parents and we are parents. They make a fantastic product and they want to help. That´s a good starting point.

That means we are on the same side.

Here´s hoping

Following the meeting we walked fown to the Park to tell Estella what had happened. It was beautiful down there and the sun was shining. I know she would have been very happy.Maria said she felt the happiest she had been since the day Estella left us.

The debate will continue but thats what it is now a debate and not a battle. ´

Photo shows Estella´s fountain this morning x