This is Olivia. She's quick witted, has a great sense of humour and a beautiful smile. Olivia loves to dance and sing. makes friends easily, draws beautifully, and has artistic flair (takes after her daddy!). This beautiful little soul is also one of the 200 people diagnosed worldwide with a very rare genetic condition; Gyrate Atrophy.
She’s also my eldest baby, and with the help of my wife and family, we’re doing what we can to give Olivia a hope for the future.
In May 2016, Olivia was diagnosed with GA. My wife noticed she was having trouble seeing in the dark when she said her prayers at night, and her eyes didn’t adjust to the lighting in the movie theatres. I took her to the optometrist for a routine eye test, expecting she may just need glasses. I will never forget the look on the optometrist’s face, when she asked for a second clinician to come in and verify her findings. While I waited with Olivia, I already knew in my heart that something wasn’t quite right. After being given a slip of paper with a specialist referral, and a very general overview of what she thought she was seeing, we left. Olivia knew only that she needed glasses and chattered to me about the colours she would pick, I walked out with my heart in my hand.
The optometrist had seen unique changes in Olivia’s eyes, and we needed a blood test to confirm the diagnosis. With a heavy heart, I called my ex-wife and sent her what the optometrist had given me. Of course, we booked her appointment, and we all went straight to Google. What is gyrate atrophy? Why did our little girl have it? How definitive was the diagnosis? Dr Google gave us the news that the disease was progressive, but nothing prepared me for the results we were given.
After a blood test to confirm she had a high blood ornithine level, and some very invasive testing, the diagnoses was confirmed. Her optometrist very clinically stated that Olivia would lose her sight at age 15 due to their belief that she had significant damage for her age and very high ornithine levels. I was shocked, drained of all energy and unable to comprehend what this meant for my blue eyed, funny and kind baby. I cried for what felt like days, and struggled with feeling completely hopeless.
And then I realised, if I feel hopeless and lost, what will Olivia feel? I’m her dad, and it’s my job to make her feel secure and help her find her path in life.
Learning about Olivia’s condition was shocking to us all. My wife and I struggled with finding information, as did Olivia’s mother and stepdad, and that’s because there isn’t much out there. Since her diagnoses in 2016, I have been researching the disease. My spare room is covered in adhesive white boards with papers, and links all over them. I have contacted every specialist I could find, had Skype and conference calls with specialists and researchers all over the world. And what I found out was, there is very little known about this disease. But we’ve put together what we do know, in easy to understand terms, to help others attempting to understand the condition.
As a family, we’re aiming to raise funds by doing marathons to fund research and to help Olivia reach a few personal goals to help brighten her future. As her dad, I want to secure her future and ensure she gets the assistance she needs both as a child and as an adult integrating into society.
Olivia has faced this obstacle in life with such vivaciousness and kept her happy soul. She is already taking control of her situation and bringing awareness to her condition, including giving a talk at her school about her condition and why she uses a cane. I’m so proud of her, and I hope we can bring some hope back into Olivia’s future by funding what she needs and eventually research into something very close to our hearts.
Please click on the pages to find out a little more about GA, and what we hope to achieve over the coming 12 months. With Olivia’s condition worsening all the time, the clock is against us. But we have hope for her future and a belief that we can slow the progression of her disease by using proven dietary restrictions, and help to brighten the future for other GA patients by funding research into gene therapies. Olivia's bright attitude towards her prognosis has helped us all to see that Hope is about being able to see the light, despite the darkness. Follow our journey as we support our girl by stretching ourselves to try new things to fund research, and show her that you can achieve anything you put your mind to.
She’s also my eldest baby, and with the help of my wife and family, we’re doing what we can to give Olivia a hope for the future.
In May 2016, Olivia was diagnosed with GA. My wife noticed she was having trouble seeing in the dark when she said her prayers at night, and her eyes didn’t adjust to the lighting in the movie theatres. I took her to the optometrist for a routine eye test, expecting she may just need glasses. I will never forget the look on the optometrist’s face, when she asked for a second clinician to come in and verify her findings. While I waited with Olivia, I already knew in my heart that something wasn’t quite right. After being given a slip of paper with a specialist referral, and a very general overview of what she thought she was seeing, we left. Olivia knew only that she needed glasses and chattered to me about the colours she would pick, I walked out with my heart in my hand.
The optometrist had seen unique changes in Olivia’s eyes, and we needed a blood test to confirm the diagnosis. With a heavy heart, I called my ex-wife and sent her what the optometrist had given me. Of course, we booked her appointment, and we all went straight to Google. What is gyrate atrophy? Why did our little girl have it? How definitive was the diagnosis? Dr Google gave us the news that the disease was progressive, but nothing prepared me for the results we were given.
After a blood test to confirm she had a high blood ornithine level, and some very invasive testing, the diagnoses was confirmed. Her optometrist very clinically stated that Olivia would lose her sight at age 15 due to their belief that she had significant damage for her age and very high ornithine levels. I was shocked, drained of all energy and unable to comprehend what this meant for my blue eyed, funny and kind baby. I cried for what felt like days, and struggled with feeling completely hopeless.
And then I realised, if I feel hopeless and lost, what will Olivia feel? I’m her dad, and it’s my job to make her feel secure and help her find her path in life.
Learning about Olivia’s condition was shocking to us all. My wife and I struggled with finding information, as did Olivia’s mother and stepdad, and that’s because there isn’t much out there. Since her diagnoses in 2016, I have been researching the disease. My spare room is covered in adhesive white boards with papers, and links all over them. I have contacted every specialist I could find, had Skype and conference calls with specialists and researchers all over the world. And what I found out was, there is very little known about this disease. But we’ve put together what we do know, in easy to understand terms, to help others attempting to understand the condition.
As a family, we’re aiming to raise funds by doing marathons to fund research and to help Olivia reach a few personal goals to help brighten her future. As her dad, I want to secure her future and ensure she gets the assistance she needs both as a child and as an adult integrating into society.
Olivia has faced this obstacle in life with such vivaciousness and kept her happy soul. She is already taking control of her situation and bringing awareness to her condition, including giving a talk at her school about her condition and why she uses a cane. I’m so proud of her, and I hope we can bring some hope back into Olivia’s future by funding what she needs and eventually research into something very close to our hearts.
Please click on the pages to find out a little more about GA, and what we hope to achieve over the coming 12 months. With Olivia’s condition worsening all the time, the clock is against us. But we have hope for her future and a belief that we can slow the progression of her disease by using proven dietary restrictions, and help to brighten the future for other GA patients by funding research into gene therapies. Olivia's bright attitude towards her prognosis has helped us all to see that Hope is about being able to see the light, despite the darkness. Follow our journey as we support our girl by stretching ourselves to try new things to fund research, and show her that you can achieve anything you put your mind to.