Dear Chris and Connie,
I remember when I first read your story via a link on twitter. It has been maybe 2-3 months now. I remember the emotions that welled up inside my own heart as I read about your precious baby and his battle. I remember looking at my own boys. I have a 2 year old and a 4 month old. I saw my babies in the picture of your son. I cried. I cried so hard. From that moment my heart, my thoughts and prayers have been with you and your sweet little boy.
The phrase “I’m sorry” seems such a shallow thing to say to you both in this time of immense heart ache and pain. I could add a couple hundred “so”s in between the “I’m” and the “sorry”. But somehow I feel that would make the phrase even less meaningful. So I will have to stick with I’m sorry.
I’m sorry your little boy was the 1 in a million to be diagnosed with this illness.
I’m sorry that for whatever the reason, the Dr’s in London were not able to treat him.
I’m sorry you had to watch your little boys health decline.
I’m sorry the courts and hospital would not let you leave even though you had raised your own funds to save your baby boy.
I’m sorry that it took the US congress so long to make you a US resident so we could have some power to bring you to New York.
I’m sorry that so much time was wasted in court proceedings and bureaucratic nonsense that your precious angel slipped into a state of hopelessness where there was no return.
I’m sorry that it doesn’t look like you will even be able to take your baby home with you to let him go in peace. But that he will be stuck in the hospital that held him a captive while there was hope.
But let me tell you… What I am the most sorry about… I am so sorry and so angry that your rights as the parents to your child were stripped from you by a bunch of damn suit and tie government bureaucrats that most likely went home to no kids or healthy kids every night. People biologically and emotionally removed from your child got to make the choice about the most important thing about him. His life.
As Charlie’s parents you had every right to do everything within your power to save his life. I would have done exactly what you did. And I would have fought like hell. Exactly like you did. I know that because of your story being known all over the world at this point lots of people will have their own opinions about what you should or should not have done. ANYONE who would side against your decisions for your baby is not worthy of second of your thoughts. Connie, no one criticizing your choices for your baby carried him for 9 months in their body or pushed him out during hard labor. Anyone that doesn’t 100% support you both in your choices for your son and in the grief you are/ will be going through is not worthy of your time.
And for every jerk out there on social media that thinks they know how you should have lived your life, there are thousands that stand with you.
You are in my thoughts and prayers as you prepare to send your baby to the angels. He will be safe. He will be free. He will be in no more pain. He will be able to see and hear. He will run and jump. He will be watching over you from above. He will spend all eternity with Jesus and the angels. And he will know that his parents fought for his life until the end. He will love you forever.
I hope and pray you will continue in fighting for the rights of parents to love, protect and do whats best for their children. I know you are not the only parents that this kind of tragedy has happened to. The all knowing government courts and officials put you through hell on earth. So you give em hell right back. Charlies Army is behind you.
From one parent to another, with love, sympathy and a really big hug,