by Jade Small

 

Little Primrose Austin has a rare condition which caused ‘’silver’’ eyes.  She lived in extreme pain due to pressure build-up behind her eyes which resulted in detached retina and the optic tissue from both eyes had to be removed as a result.

Her parents, Chris and Eryn Austin from Buford, Georgia, first met Primrose in 2014 at an orphanage in China and adopted and brought her home in 2016. The orphanage advised the Austins’ that Primrose was blind because of untreated glaucoma and potentially deaf.

Back home, her parents took her to doctors and had tests done to determine what could be done to help her.  The tests revealed Primrose has a rare genetic condition called 6p25 deletion syndrome which caused her eye problems, lack of muscle tone, developmental and hearing loss issues  These are just a few of a multitude of other possible serious health issues associated with 6p25.

Primrose was rushed to hospital eight months ago after waking up in extreme pain where specialists tried to find the source causing her pain. The pain was so extreme she was unable to eat or drink and cried continuously for up to 16 hours a day.

PICS BY ERYN AUSTIN / CATERS NEWS – (PICTURED: — MANDATORY BYLINES ON SOME IMAGES — Primrose before having her eyes removed) – A five-year-old is adapting to life without sight after her ultra-rare syndrome meant her piercing silver eyes left her in agony and had to be removed. Primrose Austin was in horrendous pain due to the problems caused by a build-up of pressure, a retinal detachment in one eye while the other endured shrinking to half its size. Chris and Eryn, 34 and 35, from Buford, Georgia, US, adopted her from a Chinese orphanage three years ago, determined to give her a family in 2016. They were told she was blind from untreated congenital glaucoma, which caused her eyes to cloud over, and that she was potentially deaf. – SEE CATERS COPY

A MRI showed extensive damage to her eyes and a decision was made to remove her eyes and as a result Primrose’s life has improved immensely and she started walking again communicates with a touch based form of sign language.

PICS BY ERYN AUSTIN / CATERS NEWS – (PICTURED: — MANDATORY BYLINES ON SOME IMAGES — The piercing blue eyes of little Primrose caught the familys attention in 2014 when they first saw a picture of her) – A five-year-old is adapting to life without sight after her ultra-rare syndrome meant her piercing silver eyes left her in agony and had to be removed. Primrose Austin was in horrendous pain due to the problems caused by a build-up of pressure, a retinal detachment in one eye while the other endured shrinking to half its size. Chris and Eryn, 34 and 35, from Buford, Georgia, US, adopted her from a Chinese orphanage three years ago, determined to give her a family in 2016. They were told she was blind from untreated congenital glaucoma, which caused her eyes to cloud over, and that she was potentially deaf. – SEE CATERS COPY

Her mom Eryn elaborated on the situation prior to the operation: “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.’’

PICS BY ERYN AUSTIN / CATERS NEWS – (PICTURED: — MANDATORY BYLINES ON SOME IMAGES — Standing up after her right eye was enucleated and the left implant had to be redone) – A five-year-old is adapting to life without sight after her ultra-rare syndrome meant her piercing silver eyes left her in agony and had to be removed. Primrose Austin was in horrendous pain due to the problems caused by a build-up of pressure, a retinal detachment in one eye while the other endured shrinking to half its size. Chris and Eryn, 34 and 35, from Buford, Georgia, US, adopted her from a Chinese orphanage three years ago, determined to give her a family in 2016. They were told she was blind from untreated congenital glaucoma, which caused her eyes to cloud over, and that she was potentially deaf. – SEE CATERS COPY

Eryn continued, “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.”

“One of the main things that drew me to her was her eyes looked like something I had never seen before,” Eryn explained.

“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 moulds are taken of her eyes sockets this month, she will have painted shells that will include a pupil and coloured 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.

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, took a series of images of Primrose and the Austin family and 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 in pain, they feel hopeful again and are ready for their new life.”

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