Cloves syndrome: Miracle drug provides new hope for girl with big feet

An 11-year-old girl whose feet are so large she needs to use a wheelchair may walk again with the help of a miracle drug.

Angel, who was born in Pakistan, has Cloves syndrome which causes the overgrowth of tissue.

The condition means that Angel’s feet are so swollen and heavy she is unable to walk.

Angel was due to have both feet amputated in 2019 at the Royal Children’s Hospital, in Melbourne, but medics deemed the operation too risky.

Australian humanitarian Moira Kelly, founder of Creating Hope Foundation, has taken on Angel’s case and after extensive research into Cloves syndrome she found a possible solution.

Ms Kelly uncovered a French report into the uses of Alpelisib, a drug often used in breast cancer treatment, for the successful treatment of Cloves syndrome.

Ms Kelly took Angel to Paris to see if she was eligible for the medication.

After an assessment she was approved and pharmaceutical company Novartis agreed to waive the $100,000 fee for the drug on compassionate grounds.

Angel’s paediatrician Dr Luke Sammartino told A Current Affair the drug have provided them with new hope.

More Coverage

“We’re really, really hoping as a team that this drug will shrink her feet down and give her back the ability to walk,” he said.

Angel will receive the first tablet in the next few weeks.

“We’ve taken a lot of pathways to get where we are now,” Ms Kelly said.

You Might Also Like