Our family is living through something no family has ever lived through, and I need people to understand what this journey has truly been. It has taken everything from us. It has reshaped our lives in ways we never imagined. This is not the version we try to hold together for the world. It is not the strong face we put on because we have no other choice. This is the real version, the one that has been breaking us quietly, the one we have been carrying alone.
Our son Khai is now Day +17 of his bone marrow transplant. He has Congenital Dyserythropoietic Anemia Type IV, a disorder so rare that only ten cases have ever been reported in medical literature. Ten cases does not mean ten people alive. It means ten cases ever documented. Out of those ten, Khai is the first person in the world to undergo a bone marrow transplant for CDA Type IV.
We are living inside a clinical trial. There is no roadmap, no published outcomes, no other family to call, and no standard protocol. We are walking through something completely uncharted, and every day feels like a step into the unknown.
Right now, Khai is struggling. He has a rash, fever, vomiting, and diarrhea. The donor marrow he received grew bacteria. He has two viruses. The terrifying part is that viruses and GVHD (Graft vs Host Disease) look almost identical, although they require opposite treatments. If the medical team treats the wrong one, it can make everything worse. We are watching our son fight through complications that even the medical team is worried about, and we are doing it alone, one day at a time.
On top of that, our family has been torn apart. We are a family of six. For fifteen years, we have been together for every day, every moment, and every milestone. My older children, Leena and Trae, are an hour away, split between two homes, trying to stay strong without the mother who has always been their anchor. I need them, and they need me. They have always had my presence, my stability, and my love. Now they are trying to cope without it, and I am trying to parent them from a distance. We are a family, and right now we are living fractured.
Our four-year-old daughter, Mela, is with us now after a month apart, but she is traumatized. She panics every time we walk out of a room because she thinks we are leaving her again. She wants to see Khai but she cannot, because of transplant rules. The last time she saw him in person, he had his long curly red hair. Now he has none. She saw him on FaceTime and pointed out that he does not have hair anymore. She did not mean to hurt him, but it made him self-conscious and more depressed. He is already fighting so much, and moments like that break us.
The hospital's housing options are unsafe for Khai and too small for our family. They keep pushing shared living, places with shared air, shared surfaces, shared kitchens, and shared bathrooms, even though Khai is immunocompromised and needs strict isolation. They say they will help with Airbnb costs, although they have not given us a list, a process, or even a number. The they turn around and say, "If he is ready to discharge, you need housing immediately". Last week they told us it was too late and too close to find housing and tried to place us in DoorWays, a shared living space that only houses three people. We are a family of six. It is unsafe, it is impossible, and it is heartbreaking.
I am still in college through all of this. Academics do not stop because life is hard. I am on a mission to change my family's future, and I refuse to quit. I have slowed down from full-time to part-time, although summer courses are accelerated. I am keeping my straight A's to ensure I protect my 4.0 GPA, but it is not easy. Sleep barely happens. I write papers in hospital rooms. I study between fevers and diarrhea episodes. I take quizzes after three hours of sleep. I am doing everything I can to keep our future alive while fighting for my son's life.
I also have CPTSD from traumatic events in childhood, one being a car accident when I was thirteen. I was cut out of the vehicle using the jaws of life and helicoptered to a trauma center. Now I am on the twelfth floor of the children's hospital with the helicopter pad directly above us, and another pad right outside our window. I hear helicopters landing and taking off all day and all night. I watch them come in fast, just like the one that carried me when I was a child. Just like the one that carried Khai the night he was born on Valentine's Day. Every time the blade hits the air, my body reacts before my mind can catch up. If you don't have this disorder then you truly don't understand what this feels like. Every noise, every alarm, every sudden movement in Khai's hospital room pulls me back into memories I never asked to relive. I am fighting my own trauma while fighting for my child.
Ryan is carrying his own weight too. He is a CDL-A truck driver, although he had to get off the road for this transplant. Instead of shutting down, he enrolled in a nine-module data analysis certification program so he can hopefully find remote work while we are in Richmond. He studies late at night after hospital shifts, trying to rebuild our future from scratch while watching his son fight through complications. He is doing everything he can to keep us afloat.
I also want people to understand something about me. Princeton University wants me. I am on track to transfer there, and once I graduate with my A.B., I will be going to Yale Law School. From there, I will become one of the best Big Law attorneys this country has ever seen. Not because I want prestige or status. I want power, the kind of power that lets me protect families like mine.
Because of what my family has gone through, I will spend my life giving back. I know what it feels like to be the little person in a system that does not make sense, does not communicate, does not support, and does not see you. I know what it feels like to be scared, displaced, separated, and unheard. I know what it feels like to fight for your child's life while fighting for basic stability.
I do not ever want another family to go through what we are going through now. When I am able, when I have the degree, the career, the resources, and the platform, I will make sure I do everything in my power to prevent this from happening to anyone else. I will donate, I will advocate, and I will build programs. I will fight for families who are drowning in medical chaos and housing insecurity. I will be the person I wish we had right now.
To reach that future, we need help now.
We are grateful for the $5,000 donated so far. Every dollar matters, and every person who helped us has made a difference. However, $5,000 does not even cover one month of safe housing, and safe housing is the one thing we absolutely must have ready the moment the hospital decides Khai can be discharged.
We are grateful, although we need more. We need help. We need support. We need our community. We need our village. We need you.
We are fighting for our son's life, for our family's stability, and for a future beyond this moment. Thank you for seeing us. Thank you for hearing us. Thank you for standing with us. Thank you for helping us carry what no family should ever have to carry alone.
