April Warrior 2024


Meet Kingsley, a Sturge-Weber warrior born with challenges that few could comprehend.

Sturge-Weber syndrome (SWS) is a rare neurological disorder usually characterised by a facial birthmark, abnormal blood vessels in the brain, and associated symptoms such as seizures and glaucoma. Kingsley entered the world with a prominent Portwine stain birthmark on his left cheek.

His condition also led to glaucoma in his left eye and put him at high risk for epilepsy and strokes, among other complications.

Despite the uncertainties, Kingsley's early months tracked along with steady growth and an infectious happiness.

His parents held hope that he might defy the odds and escape epilepsy, but their optimism was shattered when one afternoon, at just 9 months old, Kingsley began crying painfully and experiencing involuntary movements.

A trip to the hospital revealed the heartbreaking reality that Kingsley was having seizures.

The sight of their baby in such distress sent his parents into panic, but through the tears they managed to provide crucial information to the medical team and he was rushed into the resuscitation room. For 16 agonizing days, Kingsley endured relentless seizures, requiring rescue meds 3-5 times a day. The ordeal took a lot of his personality and also left him partially paralysed on his right side.

Managing Kingsley's seizures proved to be an uphill battle, with conventional medications offering only partial relief. There was some talk of a hemispherectomy, a drastic surgical option where part of the brain is removed, but Kingsley’s neurologist assured the family they would work on finding the right medications instead.

After countless hospital visits and coming very close to intubation several times, a new medication combo has brought some reprieve. Kingsley's seizures have become less frequent, allowing him precious moments of respite. With the help of intensive therapy he has defied expectations, learning to walk by his second birthday and regaining strength in his affected limbs.

Through all of the challenges, Kingsley's family have found strength they never knew they possessed.

Their journey has taught them to cherish every happy moment and draw closer as a family unit. Kingsley's strength and resilience offers inspiration, not just for his family, but for thousands of people around the world facing similar battles.

Looking to the future, Kingsley's family are committed to savouring every moment together. Their advice to others: “Take that holiday as a family that you were contemplating taking, take as many photos as you can - to look back at your journey, and take the time to make as many memories with your loved ones because there is nothing more important in life than your family.”

$5 from every T-shirt sold in this collection will go straight to Kingsley and his Family.

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