Five-year-old Primrose Austin was living in horrendous pain after a build-up 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.
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 force liquids into her mouth with a syringe to keep her hydrated."It was a heartbreaking 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 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 have moulds taken for eye implants. 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 in pain, they feel hopeful again and are ready for their new life."