Now we know what’s wrong with baby Knox.
His DNA results came back and he has Cockayne Syndrome (Type II).
It is a premature aging condition. It’s degenerative and terminal;
currently, there are no treatment options available.
I knew it was going to be something serious, but deep down, I had still hoped we
would be able to keep him.
Now I know what if feels like to hear a death sentence.
I hope you never do.
*****************************
And the doctor said:
“Take lots of pictures.”
I am so devastated to hear that Scarlett, never had a thought that this might turn out to be terminal!
I’m just beyond words right now, so I can’t imagine how you as a Mother are feeling. I am just fighting back tears because I don’t feel like I deserve to cry when this is happening to you!
I really wish there was something more I could say or do to comfort you, just know I am thinking and praying, for what good it will do, and that you’re not alone.
Thank you, Annmaree, I apprecate you taking the time to send loving thoughts and words.
-Scarlett
Scarlett, I’m so very sorry you’re going through such pain and sorrow. I don’t have any special words, but I do pray often for you and baby K and all of your family. We love you. ~Gina and Darren
Thank you, Gina. Thanks for praying for us.
Scarlett
Scarlett, I am sooo sorry n’ sad. It is never easy to hear the word disease, but terminal… I can’t imagine how you n’ your family feel to hear these words.
Have you researched, is there any one out there that has taken a different approach and succeeded???!!!! You would find more info online than anywhere. He is so precious; do you need or want another opinion or does he fit the profile?! I still hope n’ pray there is a way to help him fight; there are advances made everyday. Did they tell you how old he appears now? This must be connected with the eye surgeries; I can’t express how sad and horrible I feel. I don’t even know you, but feel connected to you and your family through blogging! He is such a beautiful boy; make every moment unique n’ special…like he is! XXX I will pray and hope there is a cure. I hope it is found in time~
Thank you, Ellen. I wish there was more to say.
There was a clinical trial in the works with a drug called Prodarsan that was supposed to slow the aging process–unfortunateloy the company (DNAge in the Netherlands) lost their funding just two months ago and the drug trial has been cancelled.
When a disease is this rare, I guess there isn’t going to be much research going on.
My eyes are watering with this news. I am so sorry. I know how devastating it can be when we see our own children have to deal with something that seems to be so unfair. Everything must happen for a reason but sometimes it doesn’t make any sense. I pray for you and your child and all of your family.
Lee
I appreciate it, Lee. It’s a tough time.
Thanks for letting me take part in the challenge even though I didn’t make it with every letter. The challenge gave me a way to vent some feelings that I needed to vent and a chance to share some art that I probably wouldn’t have shared otherwise.
Glad I found you. 🙂
Scarlett
Scarlett, I’ve been following your posts and praying at every step and thinking of ways to support you. There just aren’t any words for something like this. I am so sorry. Knox is a beautiful boy. I wish you hadn’t heard this sentence, that nobody ever had to hear this. All I can offer are my arms and thoughts from a far away place.
Annmarie said she didn’t feel she deserved to cry. I’ve had the same thought. I haven’t earned a place in your life, that I can stand close enough to share your pain.
But I see your words and images, and I see a mother who desperately loves her children. I’ve no right to cry for you Scarlett, but I do.
I’m sending you and your family the thoughts and prayers and love of a stranger, who considers you his friend. It’s all I have. I know it isn’t enough.
Joe
God can still work a miracle. 🙂 We are never out of hope…..
:Will continue to pray:
Sweet Scarlett,
I keep trying to write how I feel. Maybe art would help because the words are
so empty. I am praying that you will all be sustained and strengthened. I pray that you will feel more loved and supported that you ever have.
I love you so much .
My dear friend,
Your doctor was right. Do take lots of pictures. You may not know this, but
we lost a (10) yr. old son in 1982. His memory is still vivid in my heart and as
I look back, I can see things that I could not see when his tragic accidental death took place. We can talk later, but you have and will be at the apex of my prayers each and every day. I do love you and your baby, Scarlett, and so does
God.
Thank you, Dee. You are one of the few that know the pain that is headed my way. Thank you for praying and please continue to pray that my faith will stay in tact and that I can bear what’s ahead.
Love,
Scarlett
I am so very sorry.