Little Thumbhelena’s battle to survive takes family to America

­GLENFIELD’S Helena Lang has diastrophic dwarfism. Her family have dubbed her Thumbhelena. The 14-month-old needs surgery with one option to trim the size of her heart.

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HELENA Lang has defied the odds countless times. Now the 14-month-old faces her biggest challenge.

The youngster who has been dubbed ‘Thumbhelena’ is from ­Glenfield. She has diastrophic dwarfism.

She has a short stature, short arms and legs and her breathing has been compromised by her small chest cavity.

Her parents, Jakob Lang and Jaime Jenkins have two options — heart surgery or back surgery.

Mum Jaime Jenkins and dad Jakob Lang with Helena. Picture: Tim Clapin

One of the first photos taken of Helena.

The first includes removing her heart, trimming it down and reattaching it to her breast bone so she has room to continue growing.

Because of the rarity of Helena’s condition, her parents have decided to travel to the United States to get advice from a team of specialists who regularly deal with patients with dwarfism.

Jaime says Helena is her ‘normal’. Pictured in hospital after she was born.

Apart from having difficulty breathgin, Helena is thriving like any other child her age.

But being a one-income household means they need help from the community to cover the $10,000 trip.

Mum Jaime Jenkins, 23, who grew up in Bankstown said the pregnancy was a dream, aside from suggestions she terminate because the baby wouldn’t survive due to her condition.

Jakob and Jaime with Helena when she was smaller.

“We’d already named her and bonded,” she said.

“We wanted to have a family and due to infertility, it hadn’t been a reality until I was pregnant with Helena.

Ms Jenkins said Helena was “her normal”.

“We can’t imagine life any other way.”

Helena’s dwarfism doesn’t stop her from adapting and evolving. Picture: Tim Clapin

Mr Lang, 24, who grew up in Liverpool, said both he and Jaime were carriers of the diastrophic dysplasia gene.

“There was a one in a million chance we’d meet and have a child,” he said.

He said they want to go to Delaware in the US to help Helena and to help other Australian families.

“We want to get as much information as possible. Not just for Helena, but for other children that might be faced with the same thing,” he said.

While there they’ll see six different teams to work out how they would treat Helena.

Helena being cheeky with the camera.

True to diastrophic dwarfism, Helena has short arms and legs.

“As far as the specialist in America knows, Helena would be the first with diastrophic dysplasia to have the heart surgery, if we go down that path,” Ms Jenkins said.

“What we do today will affect Helena into the future — we need to make sure we’re making the right decision.”

If you want to help the family: gofundme.com/helenatoamerica.