A Journey Brightened by the NCF’s Support
The name Hou-Chuan was chosen by his mother, symbolizing her hope that with perseverance, her child’s life would one day be whole.
From birth, Hou-Chuan was diagnosed with Apert syndrome, a rare condition characterized by the premature fusion of skull bones, which led to increased intracranial pressure and caused his eyes to bulge. His fingers and toes were also fused due to abnormalities in both soft tissue and bone.
The day Hou-Chuan was born, the family was overcome with sorrow. The mother, said: “If I could turn back time, I would have made a different choice…”
Trying to bring hope into a the situation, Hou-Chuan’s father tried to find answer on the internet. He discovered that, with early intervention and consistent rehabilitation, children with Apert syndrome could live full lives. He comforted his wife and encouraged her not to give up. But he quietly admitted:“Honestly, I had no idea what to do next.”
Thankfully, a social worker from the Noordhoff Craniofacial Foundation (NCF) soon reached out.
As it happened, Hou-Chuan’s mother once was a donor of the NCF. Not long after she was discharged from the hospital, she received the NCF’s annual report. She read a story how Dr. Lu from Linkou Chang Gung Memorial Hospital help these new, struggling parents. After reading the report, they made a hospital appointment right away.
Hou-Chuan’s father vividly remembers:“During the appointment, Dr. Lu spent an entire hour explaining the treatment plan for Apert syndrome. She even connected us with a neurosurgeon to arrange a surgery to relieve the pressure in Hou-Chuan’s brain.”
After the treatment, their baby whose eyes had been bulging and breathing labored finally calmed. His eyes moved smoothly. His breath eased. And for the first time, his parents smiled. With renewed strength, they chose to embrace their son’s arrival with open arms and hopeful hearts.
Over four years later, Hou-Chuan is preparing to enter his second year of kindergarten. Growing up in a nurturing family, he has made remarkable progress.
Reflecting on their journey, what once seemed like an overwhelming trial has become a story of growth and gratitude. Hou-Chuan’s father shared:“We are so grateful to have had the NCF by our side. Along the way, we even met another family whose child also born with Apert syndrome was born just five days after Hou-Chuan. We share experiences and encourage one another. The road hasn’t been easy, but we are not walking it alone.”
He hopes to share a message with other parents:“It’s incredibly hard at first to accept that your child has a medical condition. But the sooner you face reality, and the sooner you seek out the right resources and care, the better your child’s chances will be for a brighter, healthier future.”
From birth, Hou-Chuan was diagnosed with Apert syndrome, a rare condition characterized by the premature fusion of skull bones, which led to increased intracranial pressure and caused his eyes to bulge. His fingers and toes were also fused due to abnormalities in both soft tissue and bone.
The day Hou-Chuan was born, the family was overcome with sorrow. The mother, said: “If I could turn back time, I would have made a different choice…”
Trying to bring hope into a the situation, Hou-Chuan’s father tried to find answer on the internet. He discovered that, with early intervention and consistent rehabilitation, children with Apert syndrome could live full lives. He comforted his wife and encouraged her not to give up. But he quietly admitted:“Honestly, I had no idea what to do next.”
Thankfully, a social worker from the Noordhoff Craniofacial Foundation (NCF) soon reached out.
As it happened, Hou-Chuan’s mother once was a donor of the NCF. Not long after she was discharged from the hospital, she received the NCF’s annual report. She read a story how Dr. Lu from Linkou Chang Gung Memorial Hospital help these new, struggling parents. After reading the report, they made a hospital appointment right away.
Hou-Chuan’s father vividly remembers:“During the appointment, Dr. Lu spent an entire hour explaining the treatment plan for Apert syndrome. She even connected us with a neurosurgeon to arrange a surgery to relieve the pressure in Hou-Chuan’s brain.”
After the treatment, their baby whose eyes had been bulging and breathing labored finally calmed. His eyes moved smoothly. His breath eased. And for the first time, his parents smiled. With renewed strength, they chose to embrace their son’s arrival with open arms and hopeful hearts.
Over four years later, Hou-Chuan is preparing to enter his second year of kindergarten. Growing up in a nurturing family, he has made remarkable progress.
Reflecting on their journey, what once seemed like an overwhelming trial has become a story of growth and gratitude. Hou-Chuan’s father shared:“We are so grateful to have had the NCF by our side. Along the way, we even met another family whose child also born with Apert syndrome was born just five days after Hou-Chuan. We share experiences and encourage one another. The road hasn’t been easy, but we are not walking it alone.”
He hopes to share a message with other parents:“It’s incredibly hard at first to accept that your child has a medical condition. But the sooner you face reality, and the sooner you seek out the right resources and care, the better your child’s chances will be for a brighter, healthier future.”
