9 minutes ago 0 Shares Little Girl With Rare Condition Causing ‘Silver’ Eyes Has Them Removed Fri Mar 15 2019 13:32:15 GMT+0000 (GMT) Fri Mar 15 2019 13:33:14 GMT+0000 (GMT) Claire Reid Claire Reid in News Powered by A little girl left with piercing 'silver' eyes and in extreme pain due to a rare condition…
A little girl left with piercing ‘silver’ eyes and in extreme pain due to a rare condition has had them removed and is now making huge improvements.
Five-year-old Primrose Austin was living in horrendous pain after a build of pressure behind her eyes left her with a detached retina, forcing medics to remove the optic tissue from both of her eyes.
Primrose’s parents Chris and Eryn, from Buford, Georgia, adopted her from an orphanage in China in 2016, where they were told she was blind because of untreated glaucoma and that she was potentially deaf.
Once in the US, she was taken to see doctors and had more tests where 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 little girl woke up in agony and was rushed to hospital by her parents where 11 specialists tried to get to the source of what was causing her such extreme pain.
Five-year-old Primrose Austin has a rare condition which caused her eyes to appear silver. Credit: Caters
Primrose’s pain was so bad she was crying for up to 16 hours a day and would refuse to eat or drink.
An MRI then revealed just how bad the damage was to her eyes and the decision was made to operate.
Since the op, little Primrose has come on leaps and bounds – she’s now walking again and is able to communicate through a touch-based form of sign language.
Mum Eryn said:“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 forced liquids into her mouth with a syringe to keep her hydrated.
“I 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.
She had an operation to remove her eyes after being left in unbearable pain. Credit: Caters
“It was a miracle, two days after she was standing up for the first time in months, was smiling and has made progress in other areas.
“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.”
Eryn and Chris first met Primrose in 2014 and after two years took her home to the US, where they were told they would need to teach her how to sit up, hold her head up and bottle feed with.
After diagnosing the rare disorder, medics also found she wasn’t completely deaf and fitted her with tubes in her ears to help improve her hearing.
Later this year, brave Primrose will undergo more surgery on her eyes and will havemouldstaken for eye implants.
Her parents adopted her from an orphanage in China. Credit: Caters
“One of the main things that drew me to her was her eyes looked like something I had never seen before,”eryncontinued.
“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 themouldsare taken of her eyes sockets this month, she will have painted shells that will include a pupil andcolourediris.
“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.
“If she never really talks or speaks, we will find other ways to communicate with her, we will teach her sign language or figure something else out.
“She has started to use her forefingers and thumb to pinch her snacks, which she couldn’t do before, and suddenly is now sleeping through the night.”
Photographer Paige Ewing, 36, worked with the family to take a series of images that showcases the ‘sacrifice the Austin family were making’.
Since her operation, Primrose has learnt how to walk and communicate through a touch-based sign language. Credit: Caters
She said: “There would be a lot of sacrifices and life changes for Primrose’s benefit, basically disrupting their comfortable lives on the behalf of her.
“In my photos I wanted to showcase her uniqueness physically and that she was already their daughter, cuddling her just like they would their own children.
“I wanted to make that visual connection showing she was an orphan living alone but now was immediately part of a family.
“Now Primrose has had surgery to remove her eyes she is no longer inpain,they feel hopeful again and are ready for their new life.”
Featured Image Credit: Caters