An unknown genetic disease affecting the livers and kidneys of two Inverleigh sisters has baffled doctors worldwide.
Jenna and Jayda Conci have been through endless operations and procedures and had DNA, skin, and liver samples sent overseas in an unsuccessful attempt to find a diagnosis.
Their mother, Rebecca, said she was at her wits’ end as she watched her daughters deteriorate almost daily.
“Jenna is now in full liver failure and has severely damaged kidneys,” Ms Conci said.
“She’s become so malnourished from her body no longer being able to absorb foods that she cannot walk properly.
“Coming from being the fastest in the class to needing help to get out of bed is heartbreaking for this nine year-old.
“Jayda has just turned seven and is watching everything that her big sister is going through while wondering how long it will be until she’s in the exact same place.”
Inverleigh and Geelong communities have rallied around the family, organising a fundraising day at Inverleigh Sporting Complex on Sunday.
Ms Conci wrote in a blog on her photography business website that the girls suffered side effects including flash burns to their eyes.
“One of the most distressing and inexplicable side effects of the unknown condition is that the girls are extremely photosensitive to the point that their eyes burn from the reflection of surfaces such as water, sand and concrete.
“Any parent’s reaction first is sudden heartache, the complete overwhelming feeling of absolute uselessness and then pain.
“Pain for the child, pain for her siblings, and pain from deep within.”
Ms Conci said she and husband Jason had planned a round-Australia trip with the girls but “well-meaning” doctors had advised them to stay home.
“Three months later Jenna could no longer walk properly, hundreds of lesions had grown in her liver and her skin and eyes had gone so yellow that you couldn’t look at her without knowing how unwell she was.
“She needs constant blood products for her liver, loads of medication, and electrolytes for her kidneys.
“She’s now being tube fed through the nose and chest to help her stay as strong as possible. She was admitted into emergency on 7 July and has not come home.”
Jenna had a liver transplant but the new organ is failing. Doctors are unsure whether her body is rejecting it or the disease is attacking the liver.
Ms Conci is working on a personal project exploring the emotional complexities of living with an undiagnosed disease.
As part of a worldwide foundation Syndromes Without A Name (SWAN), she is producing photos for a calendar and has a book planned to help raise awareness and funds for further research to help children with undiagnosed diseases.
Sunday’s family day fundraiser, Jammin’ for Jenna, runs from 10am to 3pm with live music from Australia’s Got Talent grand finalist Cam Henderson, Sam Hanson and Geelong duo Steno and Gracey.
Children’s entertainment will include jumping castles and face-painting, while market stalls, food vans, raffles and an auction will also be among the activities.
More information is available at facebook.com/JennaandJayda.
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