A family in Siusega is seeking assistance in reconnecting to the Shriners Hospital in Hawaii to help their younger brother, who was diagnosed with a condition called osteogenesis imperfecta also known as brittle bone disease.

Osteogenesis Imperfecta (OI) is an inherited (genetic) bone disorder that is present at birth.  

A child born with OI may have soft bones that fracture easily, bones that are not formed normally, and other problems. Signs and symptoms may range from mild to severe. 

Maryjane Silva-Taumanu said her younger brother Nimo Silva's condition is something no child should ever have to bear.

"My brother Nimo Moses Silva came into this world on March 10 2000, carrying this burden. Unlike most of us, even the smallest fall or bump could leave him with a broken bone; some days, it would have ended in a hospital visit," she said.

Nimo is the fifth out of seven siblings, and they were all raised by their single mother.

"She carried the weight of our world on her shoulders. Despite the challenges, she never gave up. And neither did Nimo. Growing up, Nimo spent more time in hospital wards than playgrounds. While the rest of us could run, play, and fall without fear, Nimo never had that freedom. Most of his life has been spent inside hospital rooms, his childhood filled with X-rays, casts, and surgeries. Nimo once attended Loto Taumafai School when it was still in Motootua," she said.

"He was bright, full of energy, and incredibly smart. He placed first in all subjects in his class and level. His mind works just like yours and mine - it's only his body that holds him back. His bones have always been too weak to let him attend regular schools or live like other children. 

"In 2005, he had his first surgery at the Shriners Hospital in Hawaii, thanks to a partnership between our local hospital and theirs. It gave us hope. His bones were reinforced with rods to help him grow and manage the pain. But that hope started to fade in 2015, when the partnership ended without explanation. That year was his last visit for a proper check-up."

According to Maryjane, the only word they have received from the hospital is that overseas doctors will come to Samoa for short visits, however, nothing has changed for Nimo's condition.

"And now, the pain has become worse. He suffers from severe spinal pain that often keeps him up at night, and when the pain becomes unbearable, blood sometimes comes from his nose or mouth. It’s heartbreaking to witness, especially knowing there’s so little we can do. He needs another surgery to extend the rods in his body and urgently needs help for his spine, but we don’t have the means," Maryjane said. 

"Every two to three years, we have to buy him a new wheelchair. It's become a routine for us, just like the fortnightly hospital visits every Monday, where he receives the same medications that do little to ease his pain.

"Our mum often has to take time off work to bring him to the hospital, and I’ve had to leave the office many times just to pick them up or drop them off. He can’t even take solid medications, only liquid ones, which limits treatment options even more. Still, through all the hardship, we care for him with love, never out of obligation but from the depths of our hearts. 

"He is the only one in our family with this condition, and though his body may be fragile, his spirit is strong. We’re holding onto hope, praying that one day a kind-hearted soul, a good Samaritan, might come into Nimo’s life and help ease his suffering. He deserves the world, and we love him more than words could ever say."