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Miracle Drug Offers Hope of Walking Again for 11-Year-Old Girl with Cloves Syndrome

In a remarkable turn of events, an 11-year-old girl, whose feet have grown to such an extraordinary size that she relies on a wheelchair, may soon regain the ability to walk, thanks to a potential miracle drug.

Born in Pakistan, Angel has been living with the debilitating effects of Cloves syndrome, a rare condition characterized by the abnormal growth of tissue. The excessive swelling and weight of her feet have rendered her unable to walk, causing immense challenges in her daily life.

In 2019, Angel faced the heartbreaking prospect of having both of her feet amputated at the renowned Royal Children’s Hospital in Melbourne. However, due to the high risks involved, medical professionals deemed the operation too perilous to proceed.

In the midst of this adversity, Australian humanitarian Moira Kelly, the visionary founder of the Creating Hope Foundation, took up Angel’s case. With unwavering determination, Kelly delved into extensive research on Cloves syndrome and discovered a glimmer of hope—an intriguing French report highlighting the potential effectiveness of a drug called Alpelisib.

Alpelisib, primarily used in breast cancer treatment, showcased promising results in treating Cloves syndrome. Energized by this discovery, Kelly accompanied Angel to Paris, aiming to assess the young girl’s eligibility for the medication.

Following a thorough evaluation, Angel received approval, and the pharmaceutical company Novartis displayed exceptional compassion by waiving the hefty $100,000 fee for the drug. This act of kindness ensured that Angel could embark on this potentially life-altering treatment without the burden of financial strain.

Dr. Luke Sammartino, Angel’s dedicated pediatrician, expressed his optimism about the drug’s potential. In an interview with A Current Affair, he shared, “We’re really, really hoping as a team that this drug will shrink her feet down and give her back the ability to walk.” The excitement surrounding this breakthrough offers a renewed sense of hope for Angel and her loved ones.

In the coming weeks, Angel will begin her journey towards recovery as she receives her first dose of the groundbreaking medication. The road leading to this pivotal moment has been fraught with challenges and filled with countless efforts to explore every possible avenue for a solution.

Reflecting on the arduous path they have traversed, Moira Kelly emphasized the magnitude of their achievement, stating, “We’ve taken a lot of pathways to get where we are now.” The sheer determination and resilience exhibited by Angel, her family, and their supporters have been awe-inspiring, leading them to this pivotal juncture where hope is rekindled.

The transformative potential of the drug, combined with the unwavering support of those involved, offers a glimpse of a brighter future for Angel. As the first tablet makes its way into her hands, a sense of anticipation fills the air, as if the cogs of fate have aligned to grant this young girl a chance at a life unhindered by the limitations imposed upon her.

While the journey is far from over, and uncertainties may still lie ahead, the newfound hope instilled by Alpelisib is a testament to the incredible advancements in medical research and the power of compassion. Angel’s story serves as a poignant reminder of the immeasurable impact that a collective effort, fueled by determination and unwavering support, can have on transforming lives.

As Angel embarks on this groundbreaking treatment, her footsteps become symbolic of the resilience and tenacity that reside within us all. The journey to reclaim her mobility is one that reverberates with hope, defying the limitations imposed by a rare condition and paving the way for a future filled with newfound possibilities.

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