Grayson’s story

Grayson was a beautiful baby, with deep blue eyes and a perfect smile. For mom Becky and dad George, he was their ‘little miracle’.

But on one devastating day their world was turned upside down and they were forced to make heart-breaking decisions that no parent should ever have to make. That’s when Acorns stepped in and helped them make every moment count.

“Grayson was our little miracle baby. He was perfect, absolutely perfect. He really was the most beautiful baby, he looked just like a cherub.”

Becky and George smile through tears as they remember their beautiful baby boy Grayson Brittain-McMitchell and some of the wonderful memories they shared – but also reveal the devastating day when everything changed.

Becky said: “Grayson was just perfect. You could just watch him while he was sleeping, or when he was playing. You could just watch him for hours and you’d never get bored. Ever.

“He was our miracle, we tried to conceive for six years. We had a miscarriage at the beginning followed by years of infertility and failed IVF at the end, then six months later I fell pregnant naturally.

“Then one day, while we were changing his nappy, he just suddenly stopped breathing.”

By the time the ambulance arrived dad George had given rescue breaths and little Grayson seemed to be back to normal. The family were still taken straight to A&E, and that’s the day Grayson’s frightening seizures began.

Becky said: “He went from being a normal, healthy baby in the morning to just having seizure after seizure after seizure. And they weren’t typical seizures, they were the kind where he would stop breathing.”

Frightening medical tests followed to determine the cause of the seizures before Becky and George were finally given devastating news.

The new parents were told their precious son had a very rare condition that affects only one in 40 million called Vanishing White Matter Disease.

Grayson was given only a short time to live – ‘days, weeks or months if he was lucky’.

Vanishing White Matter Disease is a genetic brain disease that affects the nervous system for which there is currently no cure. It is usually diagnosed in very young children, but can occur in adulthood, and is characterised by the degeneration of white matter in the brain.

“There was never a point – and when I say never point, I mean, not even a second – that one of us wasn’t with him. He was never alone.”

There were many magical memories with Grayson, and some of the family’s favourite moments were spent with him playing with his baby gym, bath times, reading story books together, and looking super cute in his ‘Babiator’ sunglasses.

Becky said: “Whenever you put a baby gym in front of him, he just had this look of mischievousness in his eyes. He always had a smile on his face, and you always knew that he was he was really enjoying himself. We bought a little ball pit, and it was like magic to him. There was a mirror on it, and he could see himself and I just remember the look of wonder. Everything about him just screamed happiness.”

Becky said: “Grayson laughed so much, he was just so talkative and I think the hardest thing was watching him go from this happy, vibrant baby to, bit-by-bit, just lose the ability to do something like smile then he lost the ability to even make a noise. That was possibly the worst thing about the condition. He was losing everything, but he knew it was happening.”

Grayson stayed at Acorns for five weeks before he passed away in the early hours of the morning in the loving arms of his dad George with mom cuddling him. Acorns dedicated nursing team supported Becky and George to say goodbye to their beloved son in their own time.

He was aged just six months and seven days old.

“When Grayson died, we just wanted more time with him,” Becky said. “The nurse came in and said, ‘you can spend as much time with him as you want. We won’t take him away from you’.

Becky said: “Trying to change the perception of hospices is really important, so if we can raise awareness of the work that Acorns does, and if just one person chooses to make a donation, that’s all because of Grayson.

“Personally, it brings us so much comfort to talk about Grayson and to celebrate him at any given opportunity, and I like to think that he would be really proud of us.

“We’ve always said, it would be an injustice for us to give up on life, so to do things like this is our way of promising him that we won’t give up. We will make it through, and we will carry on, even on the days we don’t want to.

“Even though Grayson isn’t here anymore, we really want him to still be able to make a difference in the world.”