August 11, 2018

Baby born with rare dwarfism given little chance of survival but she hasn't let that stop her

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Miracle baby, Helena Long, diagnosed with Diastrophic Dysplasia, one of the rarest forms of dwarfism when she born, has overcome many obstacles in her short life and continued to surprise her parents with her will to live. 

Helena's parents, Jamie Jenkins and Jacob Lang, who live in Sydney, have a Facebook page dedicated to their little daughter, who celebrated her third birthday on July 15, 2018.

The happiness that Helena's parents felt when Jamie got pregnant, was short-lived after an ultrasound during week 16 of Jamie's pregnancy revealed to doctors that the baby was afflicted with dwarfism because the baby was too small for a 16-week-old fetus. 


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Diastrophic Dysplasia is one of the rarest forms of dwarfism that affects the growth of bones and cartilage. 

Jamie and her husband, Jacob Lang, both almost six-foot tall, had never known that they both carried the same dwarfism gene due to which they had a 25 percent chance of any of their children being born with dwarfism. 


Doctors had advised the couple to abort the baby during week 34 of the pregnancy because it did not have any lung tissue, but Jamie and Jacob refused to abort their baby. 

Helena was born on July 15, 2015, and she remained in the NICU for three months. She nearly lost her life three times when she was kept in the NICU, but the doctors were able to revive her successfully. 


The parents were told to be prepared to say their final goodbyes to their baby girl when she was just a few hours old. 

They went through a miserable period waiting for the doctors to inform them that their daughter couldn't make it. However, it never happened because Helena's will to live was strong. 

The little girl’s ordeal did not end when she was allowed to go home. She had to make regular visits to the hospital for her check-up. 


Doctors informed the parents that even though her organs were growing at an average rate, her body was not growing at the same rate causing a problem of space for the organs. 

Helena's family also went to Delaware, United States, in October 2016, to consult doctors who specialized in diastrophic dysplasia, according to


The American doctors confirmed that Helena had moderate to severe level of the dwarfism. It was decided that she did not require a major surgery after the doctors were satisfied with the progress she made. 

Helena's parents wanted to share their daughter's story so that other parents who were facing the same situation would find it helpful. 


Jamie and Jacob are have stood by their little daughter's side while she has bravely faced the many obstacles in her life. She has been an inspiration to her parents and the people around her. 

Little Helena is an enthusiastic girl who loves to travel. On July 17, the family shared photos from their visit to Taronga zoo on her Facebook page. Her nanny and her aunt, Skye, accompanied the family and they even “spoilt her” with her favorite chocolate ice cream.