Sad news to share today.Charlotte Graydied last Friday at age 13 and one half.
The daughter of producerGordon Grayand Kristen succumbed in her battle against the rare degenerative brain disorderBatten DiseaseCLN6.
She was surrounded by her parents, sister Gwenyth, and brothers Callan and Gavin.
(L-R) Gwenyth and Charlotte GrayGray Foundation
Worse, 20-month-old Gwenyth also had the disease but hadnt yet suffered its ravages.
They were advised to prepare their home for wheelchairs and blindness.
Suddenly, the Grays were the ones in need of a miracle.
The Gray familyGray Foundation
They refused to sit idly.
The speed from when the Grays started fundraising, and finding potential cures, was breathtaking.
This was introduced intrathecally into Charlottes spinal fluid for the short ride to her brain.
All of them have been helped by the treatment, the Grays said.
We created the Gray Academy for her back in 2018, said Gordon.
She loved her music and social skills class that we did twice a week.
She loved to go on walks.
And she rode horses, assisted, until she couldnt any longer.
We werent ready to talk about her passing until [Sunday].
We kept it close with the family.
I ask how they are doing.
Its hard to really put it into words, Gordon said.
I havent experienced everything, he said.
I sort of have everything compartmentalized in my head, all the pain.
Mainly, I just miss Charlotte.
Said Kristen: I think we lived blissfully in denial for a while.
As long as she was with us, we were happy in whatever way she was with us.
We just would adapt to each new situation.
Shes going to be such a huge part of our lives.
I just needed to get out of the house.
And then I saw four butterflies.
And she says, Oh, look, theres two butterflies together.
You know what that means?
Theres an angel right here around us.
And I started crying, and I looked at her and I said, thats my angel.
And she got goosebumps all over her arms.
And she was like, oh my goodness.
And so every day that weve gone on a walk, weve seen these butterflies.
At her burial yesterday we released a bunch of butterflies.
And it just, theres peace and feeling like shes around us.
And so I think we just have to rest in that because we cant get her back, unfortunately.
They loved deeply their sister, I mean deeply, she said.
And its so interesting, they never saw her illness.
And just some kind of unique things happened.
The last week, Charlotte was alive.
We had the priest come over and its like, how much do you tell your young kids?
I dont want to scare them, but also I want to be honest.
And so he asked Mommy, why do you have water coming down your face?
I said, well, because crying.
He goes, Why?
Why are you sad?
I said, because Charlottes going to heaven.
And he said, I dont want Charlotte to go to heaven.
I said, I know buddy.
And then he says, Well, how will she get there?
I said, Well, its like magic.
Shes going to go up to heaven.
And he said, Mommy, if I hold her hard enough, could we keep her here?
Or is she going to float through my arms?
And I said, I think shes probably going to float through your arms, buddy.
I said, But youll always be able to talk to her.
And how do you do that?
I said, Through your heart and through your head.
And I said, Is there something youd like to say?
And he says, I want to tell Jesus that I dont want her to cough anymore.
She used to have to be suctioned a lot.
She was coughing, and you have to suction her.
I dont want her to cough anymore, and I want her to be able to walk and talk.
And same with my little guy.
Even if he doesnt conceptualize it in the way that Callan does.
Gwenyth, who turns 11 on Wednesday, feels the weight of Charlottes passing.
The day before her death, she took a nap with her sister, and held her hands.
That doesnt mean [Gwenyth] is not without her own struggles, Kristen said.
She still requires PT and OT and speech, but she has more ability.
She can still feed herself and she can stand, with assistance.
And she was going to a typical charter public school.
She just finished the fourth grade.
And I mean, thats definitely the goal.
She feels the loss of her sister, her brothers feel the loss for sure.
Charlotte was very, very loved, very loved.
And I rest peacefully in that.
For the Grays, though, the mission remains the same.
I dont want Charlottes death to be in vain, Kristen said.
The only way to move medicine forward is to keep learning and pushing.
