Jaime Lang and husband Jakob had no idea they both carried the dwarfism gene until they conceived daughter Helena, who was diagnosed with one of the rarest forms of the condition, affecting bone growth.
They were told to say their goodbyes when Helena was just a few hours old, but this miracle baby just celebrated her first birthday.
Despite Helena’s Diastophic Dysplasia dwarfism, Jaime refused to abort her daughter at 34 weeks pregnant.
“We all said our final goodbyes and waited for the dreaded call that she had gone, but she refused to give in and has since gone from strength to strength. She really is a little fighter,” said Jaime.
Jaime and husband Jakob, from Sydney, are both almost six foot tall and couldn’t believe they both carried the dwarfism gene.
“It’s crazy as we are both so tall. I would love to extend our family at some point, but we would need to think about the risks.”
“There’s a one in three chance that we could have another dwarf and they could be even more severely affected than Helena.”
But the happy couple and their gorgeous daughter are living life to the full, despite being told that Helen had died on three separate occasions.
And dad Jakob is clearly besotted with his little Mini Me.
This family have fought to be where they are today, although their smiles hide months of pain.
“It was hard being pregnant but not knowing what was wrong with my baby,” admits Jaime, “I had to accept that my baby was going to have health issues and it was impossible not to blame myself.”
“I thought it was something I must have done but, as the weeks passed, we were faced with even more devastating news. Helena didn’t have any lung tissue at 34 weeks and I was advised to terminate.”
“I could feel her kicking and we’d already named her. There was no way I couldn’t give her a chance at life.”
Adorable Helena has been dubbed the “real-life Thumbelina” and simply loves dressing up in fairy costumes and posing for the camera.
Now Jakob and Jaime are sharing their journey to offer hope and support to other parents in similar situations to theirs.
“Dealing with Helena’s diagnosis has been heartbreaking, but dressing her up in beautiful dresses gives us a sense of normality away from all her medical appointments and visible differences.”
“Helen currently models for some Australian handmade clothing businesses — she loves being in front of the camera.”
“She will always be ‘daddy’s little girl’ and we know she won’t grow more than a few feet tall.”
The brave couple admit to fearing for Helena’s quality of life, but they say it’s all worth it to see this gorgeous little girl smile and grow.
“She’s such a tiny baby but she’s so full of personality and will do anything to make me and Jakob laugh.”
“I couldn’t imagine our lives without her and celebrating her first birthday on Saturday brought back so many emotions.”