Norfolk mother Kyra Welch, writes about her experiences with her terminally ill four-year-old son Kaiden Griffin.
Kaiden, who grew up in North Creake, near Fakenham, now lives in Holt has an abnormal heart, lungs and veins and the situation is too complex for him to undergo an operation...
Dear CHD, This is a letter to you. You the silent killer. A letter to let you know how you ruined my life.
How you ruined what should of been the most joyful time of my life. I should of carried my precious little boy for nine months, I should of been able to enjoy carrying him, this tiny little human inside me.
I should of been able to protect him. You caused me so much stress, tears, sadness, you turned my pregnancy into endless scans, Hospital visits, constant worrying, worrying that at the end of it all I wouldn't ever hear my little boy cry, I wouldn't get to see his beautiful brown eyes, I wouldn't get to watch him grow.
You came into my life as such an unknown condition, a complete mystery. The endless hours I spent researching you, all 18 different types of you, and how many other conditions you cause.
Reading about how many lives you had taken, tiny tiny babies that didn't get a chance to see the world, toddlers who had barely seen the world, and older children who hadn't seen enough of the world.
Never did I think that you'd be able to hurt my baby before he was born and whilst I was trying my hardest to protect him from the world you had already got to him. So silently. And do you know what that means for me?
It means that you had so cruelly ruined my life before I'd even given birth. And even after I gave birth you haunted me, and nearly five years on you haunt me everyday still.
I sit and stare at this intelligent, clever, amazing little boy that you go to. I watch you, the silent killer, everyday. I watch you try and slowly take him from me, I watch you try and claim another victim, and what can I do? How can I stop you? A disease so common yet so unheard of, so common yet incurable.
How can I stop you? If I could give my life for his, in a heartbeat it's unquestionable. Why him. You broke me from the beginning, but you also made me strong. You got to my child before I could save him, but what you didn't realise is you chose the wrong child.
Everyday he will fight you, every single day. And the days when you think you're winning, you don't see the courage I do. The courage he has to carry on fighting you. He has a fire in him that isn't ready to go out. And after it all I ask you. The silent killer.
Why? Why me? Why us? Why my little boy? Or why that family who have just got their unborn child's diagnosis, who's life you have just ruined.
Or that family who have just held their child for the last time?
Or that family who's child has been on life support for months now waiting for a new heart? Why?
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