My name is Katie, the mother of Peter Bui Hunter, and I am writing with a heavy heart about my sweet 2-year-old child, Hunter. After a courageous fight with acute respiratory failure (with hypoxia and hypercapnia), Hunter is now under hospice care. Hunter has a history of seizure disorders, cardiac arrest, and he has SCN8A, which is a condition that affects a gene in the brain that helps nerve cells “talk” to each other. When the gene doesn’t work the way it should, the brain’s signals get mixed up.
For children like Hunter, this can cause seizures, developmental delays, muscle weakness, and breathing problems.
Because of SCN8A, Hunter struggles with things that should come easily to a toddler, like walking, talking, and playing without medical equipment. Most heartbreaking of all, SCN8A has caused severe breathing complications. At only 2 years old, Hunter is under hospice care, and we are focusing on making every day as comfortable and full of love as possible.
For a 2-year-old, this can cause the brain to send the wrong signals. That’s why many children with SCN8A-related disorders experience:
- Seizures (sometimes beginning in the first year of life, and often difficult to control)
- Developmental delays (speech, walking, or motor skills may not progress as expected)
- Low muscle tone or movement issues
- Breathing problems, which in some cases can be serious
Our family is cherishing every precious moment we have left with him, making sure he is surrounded by love, comfort, and peace.
Our Story:
Hunter loves the beach, listening to music, and being read to. Hunter has faced challenges no child should ever endure. Despite the best efforts of doctors and treatments, his little body is too fragile to recover. Hospice care is helping us focus on making Hunter’s days as gentle and joyful as possible, whether through comfort measures, special visits, or simply being together as a family.
Why We Need Support:
This journey has brought not only emotional pain but also financial hardship. Between medical costs, time away from work, and the expenses of daily living, we are struggling to manage it all. In addition, we want to be prepared for end-of-life expenses and to honor Hunter’s life in a meaningful way when that time comes.
How Your Gift Helps:
Your generosity will help us:
- Cover medical expenses if needed
- Provide comfort items, therapies, and support to make Hunter’s days brighter
- Assist with travel, meals, and bills as we focus fully on being together
- Prepare for memorial and funeral expenses when the time comes
Closing (Heartfelt Appeal):
Our only wish is to give Hunter as much love, comfort, and peace as possible. Every donation, share, and prayer means more than words can say. Thank you for standing with us during this heartbreaking journey and helping us hold our little one close through it all.
With gratitude,
Katie
Organizer
