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Miracle real life Thumbelina reaches her first birthday after escaping death three times

The real life Thumbelina has reached her first birthday after escaping death three times.

Helena now

Helena now

 

Miracle baby, Helena Lang, from Sydney was diagnosed with Diastrophic Dysplasia dwarfism – one of the rarest forms of the condition that affects the growth of bones and cartilage.

Her mum, Jaime Jenkins, 23, refused to abort her girl at 34 weeks pregnant and despite being told her girl had died three times, she has just celebrated her first birthday.

Helena, who loves being dressed up in fairy costumes and smiling for the camera, has been duped the real life Thumbelina by her parents as she will forever be their little girl and is unlikely to grow more than a few feet tall.

Her proud parents, Jaime and Jakob Lang, 24, who are both almost six foot tall, had no idea they both carried the same dwarfism gene until they conceived Helena.

Now they are sharing their journey to raise awareness for Diastrophic Dysplasia to help and offer hope to other parents who are going through a similar situation.

Helena in intensive care with mum, Jaime

Helena in intensive care with mum, Jaime

 

Jaime, a full time mum, said: “Dealing with Helena’s diagnosis has been heart breaking, but dressing her up in beautiful dresses gives us a sense of normality away from all her medical appointments and visible differences.

“Helena currently models for some Australian handmade clothing businesses, she loves being in front of the camera.

“I decided to set up an Instagram page dedicated to her so anyone across the globe can understand more about her type of dwarfism.

“She will always be ‘daddy’s little girl’ and we know she won’t grow more than a few feet tall.

“When she’s dressed up in adorable costumes she’s just like the real life version of Disney film character, Thumbelina, something I have called her on her social media pages.

“We both feared for her quality of life, but watching her laugh and grow has really assured us we made the right decision in fighting to keep her.

Minutes after Helena was born

Minutes after Helena was born

 

“She’s such a tiny baby but she’s full of personality and will do anything to make me and Jakob laugh.

“I couldn’t imagine out lives without her and celebrating her first birthday on Saturday brought back so many emotions.”

“We never imagined we’d hit this milestone, after doctors warned us she was too weak to take her first breath and then passing away three times in her first few weeks of being alive.”

Both Jaime and Jakob were told to say their final goodbyes to Helena at just a few hours old.

Jakob added: “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.

“It’s crazy that me and Jacob carry the same gene that causes dwarfism as we are both so tall.

16 week scan

16 week scan

 

“I would love to extend our family at some point but we would need to think about the risks as there’s a one in three chance that we could have another dwarf and they could be even more severely affected than Helena.”

Helena was diagnosed with diastrophic dysplasia dwarfism at six weeks old, but Jaime knew after her twelve week scan that something was wrong with her baby.

Jaime added: “It was hard being pregnant but not knowing what was wrong with my baby, 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 in her lungs and at 34 weeks 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.”

Jakob with Helena

Jakob with Helena

 

Thankfully Helena was able to breathe when she was born and even came out crying.

On July 16 2015, Helena was born and the extent of her dwarfism was revealed – she then spent three months in hospital before Jakob and Jaime both learned how to medically care for their daughter in hopes the nurses would be confident enough to let them take her home.

Jaime said: “Helena has already amazed us in so many ways, she’s a real little miracle and I hope our story helps other parents who are facing the same situation.

“She’s going to continue to hit her milestones and I have no doubt she will be walking by next year, she currently shuffles on her bum.

“We visit the hospital twice a month for check-ups but because Helena is so rare in Australia, we have to just wait and see how she develops and face any problems as they come.”

 

Do you, or someone you know, have a similar story to tell? Get in touch today to earn £££ and raise awareness.

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