I've sat in a Hospital cubicle stroking my tiny daughters hands while the parents next door (separated by a thin curtain) were told there was nothing further that could be done to save their daughter; I've felt my legs give way beneath me and my blood curdle as I heard their terrifying sobs escape their bodies uncontrollably. I've hugged parents and struggled to find the words to say when they return to the parents room after spending the afternoon with their son for the final time before letting him slip away peacefully.
The world isn't an innocent and wonderful place to me anymore; I've seen so much suffering (by brave children and their amazing parents). I've also had to watch my own daughter suffer because in some cruel way - it's the decision we made because we love her and weren't ready to give up on her.
I was tweeted by a fellow Heart Mum asking for my thoughts and feelings on the fact that a Charity providing support for Heart Families and children with feeding issues was told by a Newspaper that they weren't newsworthy as they aren't a cancer charity.
Now I'm not going to be disrespectful to any charity; any charity who funds research and supports families with any medical needs deserves all the funding and publicity available.
How can any publication deem any Charity to be not "Newsworthy"???
The facts are quite scary; of every 100 babies born today - 1 of them with be born with a Congenital Heart Defect.
CHD's kill more children than all Childhood Cancers combined.
My Brother suffers from Hypertrophic Cardiomyopathy (like Fabrice Muamba) Wolff Parkinsons White, Aortic Stenosis, Bicuspid Valve (we all should have a Tricuspid valve) and Moderate to Severe valve regurgitation.
You'd think as a family we would be done with CHD...then my own daughter was born with an Interrupted Aortic Arch and a Large Overriding Malaligned Muscular Ventricular Septal Defect.
If it can happen to us - it can happen to anyone! I started the blog in the hope that if another family found themselves in our position - they could take some information but also some hope from Martha's story. I wanted all my friends to know to ask the right questions at their Fetal Anomaly scan (20 weeks) to make sure their baby's heart was developing correctly.
I know that this is why Carren Bell founded " Lagan's Foundation" in her daughter's memory. The Charity's closed Cardiac Family Group on Facebook has been a lifeline for me during Martha's long and rocky road to recovery. Carren campaigns tirelessly to bring support to Cardiac Families nationwide, organising an annual Christmas Ball, selling items on the charity's website...need I go on?
I'd love to know who at "Manchester Evening News" decided that Lagan's Foundation was not newsworthy.