Jamie Jenkins and her husband Jacob Lang are both nearly 6′ tall. So when doctors viewed their unborn child in a 16-week ultrasound and told them the baby had dwarfism, the couple was in shock.
“It’s crazy that me and Jacob carry the same gene that causes dwarfism,” Jamie told Caters.
Their daughter, Helena, was diagnosed with diastrophic dysplasia dwarfism, one of the rarest forms of the condition.
“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,” the mother said. “I thought it was something I must have done.”
Doctors told Jamie to terminate the pregnancy at 34 weeks, but Jamie refused. They believed the baby would only live a few hours — and had already died three times.
“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,” Jamie said.
After three months in the NICU, Helena was able to come home. While she may only ever grow to be a few feet all, Jamie and Jacob love their daughter deeply.
Despite the ups and downs, Helena recently celebrated a 1-year milestone. Jamie dresses her daughter up in beautiful princess costumes and models Helena on Instagram.
“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,” said Jamie. “I decided to set up an Instagram page dedicated to her, so anyone across the globe can understand more about her type of dwarfism.”
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