Family turns to crowd funding when faced with life or death situation with little Thumbhelena

GLENFIELD’S little Helena Lange is heading to the US with parents Jakob Lang and Jaime Jenkins for specialist medical opinion to help her breath better. But they still need help to cover their costs.

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WITH just days before Jakob Lang and Jaime Jenkins fly to the US with little Helena they are still in need of money to help cover the costs.

Helena, who recently celebrated her first birthday, has a form of dwarfism called diastrophic dysplasia.

She wasn’t expected to survive birth. But has already adjusted to life with her short arms and legs. She is able to shuffle around instead of crawl and uses her thumb a lot grasp items.

Now the Glenfield family has its next challenge ahead of them. And they’re about $2500 short of covering the costs of seeing all the specialists in the United States.

Helena’s organs are growing at the normal rate, but her chest cavity is too small to accommodate them.

Helena is off with her parents to the United States to get advice on how to treat her breathing difficulties. Picture: Tim Clapin.

Couple that with scoliosis and her breathing is being compromised.

She will have to undergo heart or back surgery and both are major operations that carry implications and a long recovery time.

The family has a huge decision to make and before they do decide which path they take, they’re heading to the US for a second opinion.

In the lead up to the trip, one-year-old Helena had to be tested to ensure her safety on board an aeroplane.

The couple hopes the trip to the US will give them with some wisdom.

A team of doctors that sees children with the rare form of dwarfism regularly will meet with the family and develop a plan on how they’d treat her.

One of the first photos of Helena taken.

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 chose to go to Delaware 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.

“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.

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

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

Via Helena’s public Facebook page, the family said: “America has officially been booked and paid for. We couldn’t contain our excitement and the joy of knowing that we are finally getting our daughter treated by the best of the best.

“Thank you to you all for your kindness you have all shown.”

Can you help? gofundme.com/Helenatoamerica

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