A young girl with ‘silver’ eyes lived in severe pain due to a rare condition but now, she is making massive improvements after having them removed.
Primrose Austin, 5, was living each day in enormous amount of pain after a build-up of pressure behind her eyes left her with a detached retina — which forced medics to remove the optic tissue from both of her eyes.
Chris and Eryn, Primrose’s parents, adopted her from an orphanage in China back in 2016.
They live in Buford, Georgia.
They were told she was blind due to untreated glaucoma and she was potentially deaf.
After Primrose was in the US, she was taken to see doctors — where she had more testing done.
It was found she had a rare condition called 6p25 deletion syndrome, which was the cause of her eye problems, lack of muscle tone and her unique brain structure.
Eight months ago, the young girl woke up in severe pain and was taken to the hospital by her parents where 11 specialists attempted to discover what was causing her so much pain.
Primrose was in such agony that she cried for up to 16 hours a day and refused to eat or drink.
An MRI then revealed just how terrible the damage was to her eyes — and the choice to operate was made.
Since the operation, Primrose has made huge strides — she is now walking again and she is able to communicate through a touch-based form of sign language.
Primrose’s mother, Eryn, shared:
“It was like living in a constant nightmare, not knowing whether she would be ok.”
“Doctors tried to eliminate her source of pain one by one, we were at the point where they had worked through most of the causes.”
“It was an excruciating experience for us all, she was drenched in sweat, her body was dealing with such intense pain and her nervous system was going nuts.”
“She was hurting herself by not eating or drinking, I had to force liquids into her mouth with a syringe to keep her hydrated.”
“It was a heart-breaking decision to have her eyes removed but was 100 per cent the right thing to do, we never imagined two weeks later how much she would have progressed.”
“It’s like a whole new world is coming and it feels really good and positive, we think we will see a lot of changes in her.”
“Teaching the world she is worthy is the hardest part, as we are a society obsessed with perfection.”
“Kids call her a ‘monster’ and run away screaming and crying.”
“But she is beautiful even with her eyes looking different.”
After her rare disorder was diagnosed, medics also discovered how she was not completely deaf.
She was then fitted with tubes in her ears to help improve her hearing.
Later this year, Primrose will undergo additional surgery on her eyes and will have molds taken for eye implants.
“One of the main things that drew me to her was her eyes looked like something I had never seen before,” Eryn shared.
“We knew she had glaucoma and was possibly deaf, but she had a very rare genetic syndrome that wasn’t discovered until later.
“We were talking about life or death for Primrose, she was severely and critically ill.”
“After the molds are taken of her eyes sockets this month, she will have painted shells that will include a pupil and colored iris.”
“Now she is starting to communicate in a new and different way, she will always have to approach life differently, but we have now removed the source of her pain.”
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