Football star Gary Rohan has shared a touching photo with his newborn daughter, just hours after her twin died from a rare condition that swallowed her brain.
The Sydney Swans player welcomed twin girls Bella Rae and Willow Nevaeh with his wife Amie on Thursday, April 12.
Taking to Instagram on Sunday, Rohan shared a moving tribute to his surviving daughter, Bella, and her twin sister Willow, who tragically died five hours after birth.
Football star Gary Rohan has shared a touching photo with his newborn daughter Bella just hours after her twin died from a rare condition that swallowed her brain
Sydney Swan Gary Rohan and his wife Amie (pictured) revealed on Friday that one of their identical twins (willow, pictured right) would be born underdeveloped and die shortly after birth
‘My beautiful little Bella,’ he wrote.
‘The most perfect little souls we have ever laid eyes on, we feel so truly blessed to be your parents.
‘Amie, Bella and I soaked up every second we had with Willow, making as many lasting memories as we could all together.
‘It’s those little moments we know we will never get back, and we will forever cherish the time we spent as our little family of four, before our darling Willow grew her little angel wings.’
Willow was diagnosed with anencephaly, a fatal neural tube defect, when Amie was still pregnant.
They were told they would lose her during the delivery or soon after.
While thanking the medical team at the Sydney’s Royal Hospital for Women, Rohan said he and his wife endured ‘one of the hardest days [we] have ever had to deal with’.
‘It was a day full of many mixed emotions and you, our team, made everything so perfect. Words truly can’t express how grateful we are.’
The couple found solace in speaking openly about the condition and how they had made the decision to carry both babies to full term
Rohan said he and his wife were ‘proud parents of two beautiful little girls who we love so very much’.
‘Our little angel Willow, oh how much you taught us in your precious five hours here,’ he said.
His wife Amie also took to social media to celebrate the arrival of their newborn twins.
‘Bella Rae & Willow Nevaeh, you have changed our lives forever baby girls,’ she wrote online, alongside a montage of family photographs in her hospital bed.
‘How much love I have for you both, you two have truly shown mum and dad the meaning of love.’
‘What we have once enjoyed deeply, we can never lose. All that we love deeply, becomes a part of us,’ she added, quoting famous author Hellen Keller.
Amie Rohan, wife of Swans football star Gary, has posted a moving tribute on Instagram thanking the couple’s followers and fans
Amie was 11 weeks into her pregnancy when doctors delivered the shattering news that one of her daughters had anencephaly, a fatal neural tube defect with no cure.
The couple received an outpouring of support when they shared the news of the diagnosis on social media.
Amie thanked her followers for the huge amount of love and assistance they showered her new family with.
After doctors told the couple the news they shared it with their followers who inundated them with messages of support
‘To each and everyone of you that have sent messages of support, flowers, gifts & tried to call, can I just say a massive THANK YOU,’ she wrote.
‘I have read every single message I’ve been sent and I just want you to all know how very grateful we are to have such loving people around us.’
During the last 29 weeks of the Amie’s pregnancy the couple prepared for the birth of their twins, including preparing to lose one.
Anencephaly affects the development of the fetus’s brain, scalp, and skull. It is fatal and babies with the condition die during birth or in the hours afterwards.
Doctors suspect that a lack of folic acid before and during pregnancy increases the risk of anencephaly developing, but the exact cause remains unknown.
Amie said she had read every message that she was sent following the death of her child
Amie thanked her followers for the huge amount of love and assistance they had showered her new family with
The couple found solace in speaking openly about the condition and how they had made the decision to carry both babies to full term.
After doctors told them the news they shared it with their followers and asked if others with experience would come forward.
‘We would love for anyone who has been affected by anencephaly themselves or know of others affected by anencephaly to please contact us,’ Gary wrote on Instagram.
‘Don’t be afraid to talk to us about it. That’s what we want, we want people to ask questions, we want to talk about it with others.’
‘We still need questions answered as much as everyone else.’
As the couple shared the highs and lows of their journey over social media they were inundated with messages of support.
Everyone from footballers, their wives, members of the public and others who has also lost children to the condition followed them every step of the way with messages of love.
When Gary announced in a moving Facebook post that Willow had passed away his teammates offered the young family their condolences.
The Swans released a statement on Friday, saying: ‘Willow had five special hours with her mum and dad before ‘growing her angel wings’. Amie and Bella are now resting in hospital.’
Throughout their journey the couple have been surrounded by support and messages of love