Wednesday, May 12, 2010
Sophie, arrived on her due date, the 21st June 2007. My pregnancy was uncomplicated and Sophie appeared healthy, scoring 9/10 on her Apgar scores. We took her home the following day, the proudest parents in the world. As the weeks passed and we adjusted to our new family member and enjoyed getting to know Sophie and watching her develop. Sophie was around three months of age when she began to squeak when she breathed and struggled to feed - She would suck and suck on a bottle but the milk would not go down. Sophie was then transferred to St Georges Hospital for what would be the start of a rollercoaster ride of highs and lows. Tests eventually showed that she has mitochondrial disease which means that her body is unable to convert food and oxygen into energy. We don’t have an exact diagnosis for Sophie but we do know that she is suffering from a very severe form of the disorder, possibly one that had never been seen before; there is no cure and her prognosis is poor.
Sophie has defied the odds and is now 2 years old. She is still very floppy, her muscles are extremely weak and she cannot swallow. The disorder has affected her respiratory muscles so she has a tracheostomy which is connected to a ventilator to help her breathe. She also has high blood pressure and suffers from reflux, temperature regulation and sweating issues. Despite her problems she remains a bright, alert and sociable little girl who develops in her own way each week. Best of all she loves interacting with people and is never happier than when ‘chatting’ to people who ‘chat’ back! She also loves getting out and about, playing games on the computer and cuddles.
We don’t know how long Sophie will be in our lives for but we always remember that 'where there is life there is hope' and 'the only thing worse than false hope is no hope'. We always recite the quote ‘that which does not kill me makes me stronger’ and it helps him through the difficult times. We will never give up hope of seeing a miracle happen and for as long as Sophie is here we will love her as much as we can and make everyday count.
Sophie is a very special little girl and we are so grateful to be able to spend this time with her, we love her dearly and we really are the proudest parents in the world.
You can read more about Sophie on her website: www.thesophiestory.co.uk