Ciro finds new hope in groundbreaking Canavan disease treatment at Dayton Children's

Summary

The video tells the touching story of a child named Siro, diagnosed with Canavan disease at six months old. Despite early signs of the disease, such as difficulty sitting and holding his head up, Siro's family remained hopeful. After a diagnosis in December 2021, they joined a clinical trial in Dayton, where they found hope and support. Siro's progress after surgery has been remarkable—he can now stand, hold objects, and engage more with his surroundings. His family is deeply grateful for the care and therapies that continue to inspire their optimism and faith in his future.

Takeaways

• 😀 The child, Siro, was diagnosed with Canavan disease at six months old, after struggling with motor functions.
• 😀 The diagnosis was confirmed on December 7th, 2021, and a clinical trial was identified as a possible option for treatment.
• 😀 Despite initial struggles, Siro was enrolled in a clinical trial that focused on pioneering treatments for Canavan disease.
• 😀 Siro's parents initially denied there was anything wrong but later made the difficult decision to seek help after seeing his condition worsen.
• 😀 The family moved to Dayton to be closer to necessary medical resources and support for Siro's treatment and well-being.
• 😀 Dayton is home to one of the largest experiences in treating Canavan disease, providing a sense of hope and confidence to the family.
• 😀 The trial was a 'first in human' experience, with Siro being among the first individuals to receive this treatment.
• 😀 After undergoing the treatment, Siro showed noticeable progress, including standing with help, attempting to walk, and holding his head up.
• 😀 Siro’s ability to perform tasks like passing objects between hands and holding two objects at once improved significantly post-treatment.
• 😀 The family is deeply encouraged by Siro's progress and the continuous support from the hospital and its staff, fostering hope for the future.
• 😀 Despite challenges and uncertainties, the family remains hopeful and optimistic about the results of the clinical trial and future treatments.

Q & A

What signs led to Siro's diagnosis of Canavan disease?

Siro was not sitting up alone, couldn't hold his head up, and had difficulty eating at around six months old, which led to concerns about his health. These signs prompted further investigation, and he was diagnosed with Canavan disease on December 7th, 2021.

How did the family initially react to Siro's diagnosis?

As a mother, Siro's mother was initially in denial about his condition, struggling to accept that something was wrong. The diagnosis was very painful for the family.

What was the role of the clinical trial in Siro's treatment?

The clinical trial provided hope for Siro. Although he hadn't lost all his functions, he was still struggling with motor skills and stability. The trial was a potential treatment option, offering a way to intervene early and possibly improve his condition.

What was the significance of the family's decision to move to Dayton?

The family decided to move to Dayton to be closer to the care and resources Siro needed. They recognized the hospital's expertise in treating Canavan disease and wanted to ensure Siro received the best possible treatment.

Why is the treatment trial considered a 'first in human' trial?

The trial is referred to as a 'first in human' trial because it is the first time humans are being exposed to the treatment. This makes it a groundbreaking and experimental approach.

How did the family feel about the treatment and the medical team in Dayton?

The family expressed a great deal of confidence in the medical team in Dayton. They felt supported and reassured by the professionalism and resources available, which contributed to their positive outlook.

What were some of the positive changes noticed after Siro's surgery?

After the surgery, Siro showed significant progress, such as being able to stand with help, try to take steps, hold his head up, and pass objects from one hand to another. He also started holding two objects with one hand, becoming more attentive and engaged with his surroundings.

How did Siro's progress impact the family's outlook on his future?

Siro's progress gave the family hope and strengthened their belief that he would continue to improve. They were encouraged by the changes they saw and were optimistic about his future, particularly given the intensive therapies he was undergoing.

What did the medical team think of the family's response to the challenges they faced?

The medical team was deeply inspired by the family's resilience. Despite facing one of the hardest challenges a family could endure, they remained courageous and focused on finding a solution for Siro's condition.

What is the family's overall sentiment toward the treatment and care Siro is receiving?

The family is very enthusiastic and grateful for the treatment and care Siro is receiving. They appreciate the progress he's made and have confidence in the hospital's expertise, continuing to feel hopeful about his recovery.