The Violet Foundation: Meet Estella (SMASH SMA)

Up until I came across the story of Avery Canahuati I, along with many of you, had no idea what SMA was. Avery helped educate so many people about this dreaded disease but there are a lot more Avery's out there. My next several posts will highlight some of Avery's friends both past and present.

Estella Super Star

On Feb 24, 2011 a bright beautiful baby girl named Estella Sweetman-Lopez was brought into the world. So beautiful and precious her parents, Tom and Maria, had all the aspirations and dreams any parent would have. Seeing Estella celebrate birthdays, her first day of school, her first boyfriend, high school graduation, and so on. Estella was a happy

All this changed when at her 8 week checkup Estella was diagnosed with SMA Type I.

From Estella's blog (http://livluna.com/profiles/blogs/estella-and-sma)

"Last year I was massive, I even didn't know for certain if Ryanair would let me fly to see my family for Christmas because It was very obvious I was very pregnant... they not only let me flight then but later on January when I went back home to give birth to Estella three weeks after.

I remember New Year's eve as one of the happiest days that year, so full of promise in the future. We had a party at our flat in Spain, the only night I can be the hostess, and Tom and I bought far too many sweeties, and one year more the vegs where cold, but nobody would tell me because is very bad taste upseting a massive, hormonal pregnant woman. My resolutions were simple, 1. Become the best mum I could possibly be 2. Loose all the weigh I got before the Summer 3. Stop getting bothered about the future.

In February Estella was born, in April we went back to Uk, later that month She was diagnosed with SMA and although I tried to deny the evidence my time with her was running out. In June I had to rush Estella to ICU where we spent the next 2 months... no need to say my second resolution came to nothing thanks to the hospital food. In September we went for a week respite to Bluebell Wood that became two months. In November Estella left, leaving my lap and my heart empty, and she took also my 3rd resolution because ever since all I wonder is how to face a future without her in it."

Estella was a happy child. Smiling, playing, and watching her favorite tv shows. She had her toys and stuffed animals just like any other infant. The only difference is she did not have the muscle control other babies did. She needed assistance with many of the activities most of us take for granted. But this never effected her happiness.

Estella and her Giraffe

Estella had her good days and her bad. Most were spent in hospitals or hospice but she was always a happy baby. While these children are suffering from a horrible disease they are actually of average or above average intelligence and from the patients I have studied very happy children. The first thing I notice is there eyes. There eyes are so full of life and excitement.

Unfortunately on Nov 30th, 2011 Estella left this existence to watch over Tom and Maria from heaven. While she is not physically here Estella's parents still work to save Estella's friends from the same fate. I encourage each of you to help keep Estella's legacy alive!