9th of feb 2005
My beautiful little girl arrived in the world with her big blue eyes and chubby little cheeks
She was truely beautiful and still is to this day!
But on 24th of september i had some heartbreaking news that was to forever turn my life upside down, My innocent precious perfect daughter may have an illness called Marfan syndrome!
After reading up the signs and symptoms i wondered if this was the true cause of her slight lazy eye?
Was my daughter healthy on the inside?
Will she die young?
Her father (whom shares the same illness) had told me his brother had died of it at 26 a year earlier
so alot was going on in my mind. I was terrified and on the verge of a breakdown.
After many tests and watching doctors poke and prod my daughter we finally got a diagnosis earlier this year.
I broke down in tears as i read the letter.. Yes my innocent little girl was a victim of this cruel illness and there was nothing i could do to help her!.
On july the 26th it was her second attempt at a heart scan and this time she was a very good girl and had it done, Unfortunatly expecting all to be fine my heart sank when i was told there is some dilation to her Aorta and a leaking valve causing blood to flow back into her heart Thank goodness my mother was there with us otherwise i think i would have lost the plot!
I tried so very hard for Nevaeh to hold back the tears but i just burst into floods of tears my mother told Nevaeh i was just hot and tired and i felt so guilty!
On the way home i felt my heart break even further when my innocent little girl uttered the words "so, is my heart broken mummy?" This was the most awful and saddening thing i has ever heard her say! i just told her No, it is just a bit sore and we need to look after it.
Since that day she has asked many questions like "Is my heart going to break" "Has my heart failed?" "What noise is my heart making" etc and she has been finding it hard to sleep and understandably has become a bit of a handful.
I am trying my very best to make her and her little brothers lives as nice as possible and i love them both too bits but sometimes the pressure and the pain get a bit much and i cry myself to sleep.
Her next heart scan is on November 15th and i am trying everything i can to take our minds off of the Marfans untill then.
I brought a MarfanTrust t-shirt the other day and i do plan on raising funds.
I may not be able to cure my daughter but i will do all i can for the possibility of having one in the future.