Mothers Day Gift!

Being a mother is a gift, but being a mother brings challenges too. Being a mother of a child with a medical condition brings extra challenges -you can never take a day for granted. A call from the school nurse can change the plans of the day, or "Mommy I have pain in my belly" means we head home from an outing. My daughter Rosie was born with cystic fibrosis, this is a genetic disorder that causes thick mucus to block the lungs and digestive system, the median life expectancy is only 37 years - but I don't go there as I am determined to do everything in my power to get a cure for Rosie!

Yesterday started like any other Monday morning but within a few hours the day had changed! After getting the kids to school and a quick walk, the phone rang, it was the school nurse "Rosie doesn't feel too good". I made a quick phonecall to say I will be late for an appointment at 9.00 and then picked her up at school, this is common for her, CF is a horrible disorder for a teenage to have to deal with. I took a quick glance at my emails( as I do too often!) and saw an email from a friend who works at the Cambridge based pharmaceutical company VERTEX, it was press release announcing that a drug they are developing VX809 had promising results in phase 2 clinical trials. This email changed my day, I cried when I read it, "VX 809" has shown improvement in the lung function of Cf patients!! This could change our lives, this drug is suitable for Rosie's type of CF and could mean that she could have a long and healthy life.

I know the drug is only at phase 2 and still has to undergo many tests before it is considered safe and then needs to be approved. It costs an incredible amount of money to produce this drug and I am sure that will cause problems in itself.  But VX809 gives me hope, hope for the future of my daughter and that is all I could I ask for as a Mothers Day gift!

If you would like to help us with raising money for the CF Foundation so this research can continue you can walk with Team Rosie's Roses on May 19th in Great Strides. You can sign up or donate http://www.cff.org/Great_Strides/PaulaGarvey4592