A brave young woman battling an extremely rare ailment is given a ray of hope in the form of a small tablet that has the potential to change her life. This is her story:
11YO from Pakistan suffers from a rare Cloves Syndrome
Angel, 11, was born in Pakistan with ‘CLOVES’ syndrome, a disease that affects only around 200 children worldwide, and traveled to Australia for treatment for the first time in 2017.
His disease causes excessive tissue development, to the point where his feet have permanently grown to the size of watermelons and he requires a wheelchair to get around. Her bright, bubbly demeanor (she loves board games) is a miracle in itself, given that she suffers almost daily discomfort when her organs are crushed by enlarged tissue, requiring a full hysterectomy last year at the age of ten years.
However, thanks to Moira Kelly of the Creating Hope Foundation, who took on the role of Angel’s guardian while she is in Australia, she has been granted access to a trial drug with promising preliminary results.
“All I really want now is to get better and be normal like the other kids,” Angel said as he fought back tears on A Current Affair on Tuesday. “All I want is to be able to move and do other things without pain or difficulty,” he added.
Kelly started her own study after seeing more than 100 doctors in three countries and undergoing many major procedures, including a double foot amputation that was canceled last year because it was too dangerous.
The girl will be given a pill that costs $100,000 a year
On one of his 3 am research trips, he struck gold: a drug originally developed by Novartis for breast cancer that has had great effects on Angel’s disease.
Kelly and Angel got cash and traveled to France to meet with a doctor who is one of the few in the world who has experience with CLOVES, and he promised to place her on a CLOVES trial. The tiny pink pill costs $100,000 a year, but after hearing Angel’s story, Novartis is giving away the drug out of compassion.
“As a team, we really hope that this treatment can shrink his feet and restore his ability to walk,” said Angel’s Melbourne-based pediatrician, Luke Sammartino. He is part of a larger Australian team of radiographers, pathologists, oncologists, GPs and surgeons working together to save Angel.
“She’s amazing, considering everything she’s been through, and she never complains.” “I would like to see Angel do two things: one, she told me that she wants to dance, and second, I would like her to outlive me by many, many years,” she said. The first dose of the medicine will be given to you next week.
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