Hi I'm Estella and I'm 3 months old. I have been diagnosed with SMA type I which gives me many chances of dying before my second birthday. This blog's aim is to raise funds to find a cure for SMA so I don't have to leave this world too soon to discover how wonderful is. you can donate to the Jennifer Trust on http://www.justgiving.com/estella-sweetman-lopez
Tuesday, 28 February 2012
THE ART OF MAKING THE PERFECT SOUFFLE
As many of you know Estella’s birthday was last Friday, she would have been one, but you already know that too. We got thousands on messages for the Tink, some people even baked cakes and blew candles and let balloon fly free in the February night, for all that demonstrations, thank you so much.
We promised Estella a few things, Smash Sma is one of them, and although still we are far from see this wish coming true we get a bit closer everyday. Another thing her dad and myself promised was keeping on living, maybe this is the hardest, keeping on the faith and the smile no matter what, but a promise is a promise.
When Estella was here I saw life as a rollercoaster, you never knew, you lived for today, if she had a good day you took it with both hands making it the best, making memories for the bad days to come. There was no future nor past only NOW. You lived for the day, you smelt her hair and tried to remember every note of her sweet fragrance. Every second precious and intense, today was what mattered…
Then she died, and from that day life became a Marathon. It didn’t matter how fast you run, what mattered was to keep in the race, to think of the future as a goal. Today didn’t matter and you only wished the days past fast to that day where you life began again. We promised her to keep on living, and to make her live again in a certain way by giving her a sibling, at least part of the genetic inheritance that made her would make new life… make it to that first appointment when all possibilities start again with the hope on a better future.
This transition is hard, life trained us for the moment and now we have to learn to be patient and hang on for tomorrow.
Last Thursday, at last, we went to our first appointment with the Geneticists… making a baby in those premises is like having the recipe for the perfect soufflé. If you like cooking as I do you know is maybe the most difficult recipe because it can go ploff at any moment, so the recipe to bake a healthy baby… it goes like this:
First let the mum not be too fat, not too slim, not a smoker, not a drinker, not too old. Then they switch off her ovaries to a chemical menopause so to be able to control her periods, then they will over stimulate the hen, pardon the mum to give as many eggs as reasonable, at this point too much or too little is bad. They will extract them latter by using a syringe with a very long scary needle.
Then take the dad to a quiet place with a specimen bottle and a copy of penthouse magazine to do his business. Once you have the basic ingredients they will make the embryos ant Guys in London. At this point only negative or carriers of SMA embryos can be used and only if they are healthy enough to survive the trip back to the womb. If we get any embryo (sometimes they don’t have any left and they have to start from scrap) mum and dad will go back to Guys and the embryo will be implanted, again with the scary long needle and a little bit of tender loving anaesthetics. A few weeks later, pregnancy test, if positive scan at two weeks, if all ok appointment with GP and all the ups and downs of a natural pregnancy… and then concentrate on a positive outcome ( here comes my mantra: baby in the crib, baby in the crib, baby in the crib)
With this procedure we have some less than 30% of a baby in the crib… I know that it doesn’t sound much, but is still much more that my chances of baking the perfect soufflé or being a size 8 or giving up chocolate for good.
Thank you from this humble blog to that clever people at Children’s, Jessops and Guys that can make the miracle happen, I’m already wishing on my own personal star.
We are still running the marathon… Let’s the Games begging.
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