By Emma Dunn
A toddler born with a cyst the size of a pineapple under her arm is so heavy her spine has started to curve.
Jessi Campbell, two, was born with an estimated 1kg growth on her left arm, chest and fingers.
She was diagnosed with lymphatic malformation before birth – where lymph vessels form abnormally – and Kippel-Trelauney Syndrome at 11-months-old in July 2022.
The syndrome is a collection of symptoms – port wine stains, varicose veins and hypertrophy which is the extra growth of a limb.
Jessi has had three rounds of sclerotherapy – where a solution is injected into the veins to make the lymph collapse and shrink the cyst – and will continue to have more.
She took longer to walk – due to her balance – and is now struggling with a curved spine due to the weight of her arm.
The weight of her arm changes “almost every day” because of the movement of the fluid – and can become heavier when Jessi is unwell.
But parents Amara, 34, and Jonathan Campbell, 35, fear Jessi will be bullied and have already heard strangers call Jessi’s cyst “disgusting”.
Amara, a stay-at-home-mum, from Brisbane, Australia, said: “Some have said ‘look she’s got a disgusting arm’.
“We tell her she’s beautiful.”
Jonathan, a support worker, said: “There’s always people staring and looking at her hand.
“Kids started pointing at her.
“We never tell her any bad things about her arm.
“We don’t act repulsed or anything.”
Amara was told Jessi had a cyst on her arm at her 19 week scan – and medics suspected it was lymphatic malformation.
But Amara and Jonathan – who have older daughter Sophie, four – didn’t know exactly what to expect.
Jessi was born on August 28, 2021, and weighing 7lbs 9oz and the pockets of fluid covered her left arm, chest and hand.
Amara wasn’t able to see her daughter properly for three days – after losing three litres of blood during the birth.
Jonathan said: “Her lump was bigger than we were expecting.”
Amara added: “It was a shock.
“It was really purple.
“It was confronting.
“I felt scared for her.”
Jessi spent 10 days in Mater Children’s Hospital, Brisbane, before she was able to come home.
Amara said: “All the baby clothes we had didn’t fit and we had to get custom made clothes for her.”
Jessi’s growth hasn’t stopped her walking or playing with her older sister.
Amara said: “I took her a while to find her a balance for walking.
“She has big sausage fingers on three of her fingers.
“The palm of her hand is like a bubble.
“She’s doing really well.
“She does grab things.”
Jessi was officially diagnosed with Kippel-Trelauney Syndrome after a skin biopsy in July 2022.
She has since had three sclerotherapy and will continue to have two to three treatments a year to shrink the mass.
Amara said: “Her spine is beginning to curve because of the weight of her arm. She leans.
“She’s so stubborn – she’ll do anything.”
The parents are taking it day by day with Jessi – who also undergoes hydrotherapy, physiotherapy and occupational therapy.
They hope her arm will have shrunk by the time she reaches school age so she doesn’t get bullied.
Currently they are unable to tell what difference the therapy has made.
Jonathan said: “By the time she’s at school my hope is she’ll have a smaller arm.
“I remember at the beginning we were told her arm will look somewhat normal by the time she starts school.
“We’re looking forward to see that progress.”
Jessi still needs custom made clothes to fit around her arm and the family are fundraising to help with the ongoing costs – https://www.gofundme.com/f/help-jessi-in-life.
Amara said: “She’s growing faster than her arm.”
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