Adopted Five-year-old Adapts To Life Without Sight After Ultra-rare Syndrome Meant Her ‘Piercing Silver’ Eyes Had To Be 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.
Back in home in the states, tests would reveal she has 6p25 deletion syndrome which has caused her eye complications, unique brain structure, lack of muscle tone and other problems.
After Primrose woke-up in ‘crisis’ eight months ago, 11 specialists were baffled by what was causing her agony – that was so intense that she cried for 16 hours a day and refused food or liquids.
Later an MRI would reveal the extent of the damage to her eyes, forcing surgeons to remove the optic tissue from them both.
Since then she has made a miraculous recovery, starting to walk again and is now learning a touch-based form of sign language to communicate.
This month she will undergo more work on her eyes as well as taking moulds of her eye implants ready for painted lenses later this year.
Eryn, a full-time caregiver, 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% 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.
“In March after the moulds are taken of her eyes sockets, she will have painted shells that will include a pupil and coloured iris – without kids calling her ‘monster’, running away, screaming and crying.
“Teaching the world, she is worthy is the hardest part, as we are a society obsessed with perfection.
“She is beautiful even with her eyes looking different and right now a pink colour with these implants.”
The family first saw a picture of Primrose in 2014, her ‘striking silver’ eyes called out to them, which they were told was caused by congenital glaucoma.
After two years they were able to take her home, where they would need to teach her to sit-up, hold her head and feed with a bottle.
US medical teams would detect her unique syndrome, that she had light sensitivity and was not completely deaf.
Eryn said: “One of the main things that drew me to her was her eyes looked like something I had never seen before.
“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, we didn’t know she would get sick two days before we got there, she was severely and critically ill.”
Primrose had laser treatment to reduce the pressure building-up behind her eyes and tubes put in her ears to help her hear more.
Last year, the little girl battled 76 days of ‘crisis’, leading to the removal of her optic tissue and since then she has drastically improved.
Eryn said: “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.”
Eryn and her husband knew years before that they wanted adopt a child and they say it has been a ‘beautiful and rich experience’
The United Nations Children’s Emergency Fund (UNICEF) estimate there are roughly 153 million orphans worldwide – increasing by 5,700 every day.
The family believe in ‘the right to belong to a family’ and hope more people will open their hearts and homes to children in need internationally and domestically.
They hope Primrose’s biological parents can one day be at ease knowing their daughter is safe, happy and in a loving home.
Eryn said: “Primrose wasn’t abandoned or given up. We believe she was fully loved by her parents, they had their backs against the wall and chose to give her a better life.
“I hope her mother is out there somewhere and has peace knowing her daughter is alive and loved.
“Primrose has a right to a family, she is worthy of love and I’ll waste myself making sure she has that, as I will for all of my current and future children.
“She had enriched our family and community, she illuminates everything, she is the most joyful human being even when fighting extreme discomfort and pain.”
Photographer Paige Ewing, 36, captured images of Primrose prior to her eye tissue being removed and tried to focus on how she was already so loved by the family,
The family, lifestyle and wedding photographer, said: “I wanted to share with other people the sacrifice that the Austin family were making.
“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.
“I have the upmost respect for the Austin’s, it is humbling and makes you see the bigger picture of God’s love, they are the perfect example of what that should look like.
“They didn’t do it knowing it would be fun they did it knowing it would be hard and still said, ‘Yes.’”