'WE TELL HER SHE'S BEAUTIFUL'
Mum shares ‘shock and fear’ after her baby girl was born with a ‘pineapple-sized’ growth
Her mum has described the moment she first saw her daughter's cyst
A TOT born with a cyst the size of a pineapple is so heavy her spine has started to curve.
Two-year-old Jessi Campbell suffers from a rare condition that caused a 1kg growth on her left arm, chest and fingers.
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Parents Jonathan Campbell, 35, and Amara, 34, were "shocked" and "scared" for their little one when they first saw the growth.
They fear Jessi will be bullied and have already heard strangers call Jessi's cyst "disgusting".
Amara, a stay-at-home from Brisbane, Australia, was told her daughter had a cyst on her arm at her 19-week scan.
At the time, medics suspected she probably had a lymphatic malformation, which is where lymph vessels form abnormally.
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Still, Amara and Jonathan - who have an older daughter, Sophie, four - didn't know exactly what to expect.
Jessi was born on August 28, 2021, with pockets of fluid covering her left arm, chest and hand.
She has big sausage fingers on three of her fingers, and the palm of her hand is like a bubble.
Amara Campbell
Amara said seeing the growth for the first time was a real "shock".
"It was really purple [and] confronting," she explained.
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"I felt scared for her," she added.
Jessi spent 10 days in Mater Children's Hospital, Brisbane, before she could come home.
"Some have said 'look she's got a disgusting arm'," Amanda said.
"We tell her she's beautiful."
Her growth means it is extremely difficult to find clothes that fit, and instead, the tot relies on custom-made clothes.
Jessi's growth hasn't stopped her walking or playing with her older sister though.
Amara said: "It took her a while to find her balance for walking.
"She has big sausage fingers on three of her fingers, and the palm of her hand is like a bubble."
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Jessi was officially diagnosed with Klippel-Trelauney Syndrome (KTS) after a skin biopsy in July 2022.
The condition affects around one in every 100,000 people globally, and one in every 30,000 in the UK.
It can cause symptoms such as port wine stains, varicose veins, and extra growth of one limb.
KTS itself cannot be cured, but the symptoms associated with the disease can be eased with treatments.
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.
Amara said: "Her spine is beginning to curve because of the weight of her arm. She leans."
Hopes for the future
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 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 would look somewhat normal by the time she started school.
"We're looking forward to seeing that progress."
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The family are raising money to help pay for the custom-made clothes and ongoing costs associated with her illness.
At time of writing, the fundraiser had made $5,202 (£2,707) of the $15,000 target.
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What is Klippel-Trenaunay syndrome? And what are the symptoms?
Klippel-Trenaunay syndrome (KTS) is named after the two French doctors who described the condition in 1900.
Symptoms often include port wine stains, varicose veins and hypertrophy (extra growth) of one limb.
It is usually present at birth but may not become apparent until varicose veins are diagnosed or the extra limb is noticed.
KTS' cause is unclear but may be due to blood vessel problems during pregnancy.
It affects one in every 20,000-to-40,000 children.
Males and females are equally affected.
What are the symptoms?
- Port wine stains: a flat, red or purple mark
- Varicose veins: swollen, enlarged veins that usually occur on the legs. They may be blue, lumpy or twisted in appearance
- Limb hypertrophy: an extra growth on the affected limb
KTS cannot be treated. However, its symptoms can often be eased.
Laser treatment can ease port wine stains, while compression stockings can relieve varicose veins.
Limb hypertrophy can be treated via raising sufferers' shoes or surgery.
Source: Great Ormond Street Hospital