Jessi Campbell is a one in 100,000 toddler. The Queenslander, who turns three in August, was born with a giant, one kilogram mass on her body, after being diagnosed with a rare syndrome.
And while the little girl with a gorgeous smile is just like any other toddler in many ways, her life will never be easy. And her parents are keen to shine a light on her condition, to educate and raise awareness.
“She is aware she looks different and knows she gets called ‘the girl with the big arm’, her dad Jonathan explained.
Her mum Amara knew there was something wrong after her 19 week pregnancy scan.
“We were both shocked and very unsure of what was going on when we were told the news,” she said said.
The couple was told that their daughter had Klippel Trenaunay syndrome (also known as capillary-venolymphatic malformation (CVLM), which causes overgrowth of soft tissue, blood vessels, lymphatics and bones. It’s a life-long condition, which presents with a port-wine stain birthmark and enlarged arm of leg.
Amara’s pregnancy was carefully monitored from 22 weeks, with Jessi born naturally at Mater Mothers’ Hospital on 28th August, 2021, weighing 3.6kg,
The lymphatic malformation on Jessi’s left upper arm was the size of a pineapple.
“We had no idea if the mass would cause complications before and after birth. The main thing the doctors were worried about was if Jessi’s breathing could be obstructed by the mass,” Amara said.
Jessi was in the NICU for 10 days, and her treatment has continued throughout her short life. Recent x-rays have shown Jessi’s spin is starting to curve from the weight she carries on her left side.
“As Jessi is immune compromised, she does get sick quite often. Her arm also flares up and is sore when she is sick,” Amara said.
“Jessi will never look normal, but we hope she won’t look as swollen after more procedures.”
Professional Images: Annette Dew.
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Ellen replied
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mom93821 replied
- 22 May 2024 , 4:52 am
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Ellen replied
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