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Thursday, 29 March 2012

What is a guardian angel?

Out there there are people working from dawn to dust, they dont know us, not our children, nor the times we had to fight to get the oxygen flowing to their lungs, nor the times we cried secretly with anger, feeling defeated because we were fed up of going to a war we had no chance to win...
They still go to work everyday, like that elfs of the shoemaker's tale, winning battles while we sleep, keeping us in bussiness with the hope of a cure for our kids.
After a lot of hard work they did amazing discoveries, like how SMA affects the muscles, and why our babies got worse from the 2nd month of life. Why many babies are misdiagnosed and die before their time as nobody heard of the disease, and the most important of all, they have transformed the most severe form of the disease to type 2 in mice which now have passed from living  1 week only to several months, that translated to humans is from living months to years with a much better quality of life, giving more quality time to families, and time to find the cure also. They are offering us hope in a better future
This people are becoming my guardian angel, the ones i pray and trust, not with my daughter's life, i can't do that anymore, but with the lives of the ones to come, with the future, with a victory in this war that has taken so many lives.
How much a dream cost?
£100,000 a year, only to keep the lab working. Is not much if we think about the expenses that NHS has to pay for SMA collateral damages, is nothing compared to the heartbreak of our families. They struggle to find the money, they end covered of grant forms to fill in to keep on going, they sell their wings to heartless farmaceutical companies just not to kill the dream, our dream, of a childhood for Estella, Alfie, Theo, Maddy.... And so many others, too many, like poppies in remembrance day.
Why for once dont we help the guardian angel to help us? why can't us help Proffessor Gillingwater's team? by doing so we will be empowering ourselves, we will give the babies that left and the ones that are still fighting a second chance

1 comment:

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