The campaign to raise awareness about SMA has had incredible success. There are dozens of amazing stories and some of the followers we have are doing unbelievable things with shows of support that I am personally humbled by. They show respect towards our little girl that I find amazing from people who never met her charismatic eyes.
You have to know though that I have so many moments when I wonder if we , and in particular me , are doing th right thing. Are we keeping Estella alive and being untrue to her memory. Are we writing about her in a way that people will find disrespectful and strange ? I know the answer but believe me I do worry about perception. This is especially true when I feel raw and when I miss her and tweet my naked emotions. We get wonderful responses about being brave and inspirational and I always say that is simply not true. There is no bravery involved. There is simple and pure love. We know that Estella was cheated out of a childhood and a life by a cruel and incurable disease and we want her legacy and her memory to be that her life and her death saved other little ones from this experience.
Where I have drawn he line is by not going for all out media exposure. Believe me I was very tempted as there is a part of me that knows that to highlight SMA I need to highlight Estella. That is the part that captures hearts and after hearts come minds. The problem I have though is that I do not want this to be just about one baby - even if it is our baby. To have stories written or excerpts on TV news about Estella and her Twitter campaign is to ignore the real issue. The real issue is that there is a disease that people have not heard of that kills babies. I think it is a story that 1 in 40 carry the disease and there is still no cure. I think it is story enough that if you go to a doctor and ask for a test for the number one genetic killer the answer is no.
I don't want this to be about Estella. That said I have decided that if anyone wants to use photos of her or details of her disease or her journey then that is OK. The bit I do not want is for Maria and myself to have names mentioned. It's not about us. I hope that this makes sense. I know that there are aspects of media coverage that we may miss out on because of this but we have to have some kinds of boundaries. I spend time answering every message we get. Some nights 300 to 400 replies but I really think its important that this does not end up being anything that suggests that Maria and I are parents who are in any way outside th norm. I want documentaries and articles and blogs and videos. I want all of that but I don't want people to think that SMA is something tht only Estella had. We owe that to every child who has or will have this disease.
What we owe Estella is to be faithful to the promise we made her. We said that we would do what we could to help beat his disease. You are all helping with that. If you think of ways to raise awareness even more then the answer is yes. If you want to use anything I have written the answer is yes. If you want me to talk to a meeting with 200 people the answer is yes. Where the answer is no is anything that seems to be about promoting us. We call ourselves Muppet Daddy and Cuddly Mummy for a reason. It's because Estella is important. SMA is important. Babies and parents are important.
We are not
Hope that makes sense.