A few weeks ago, we were invited to Asians for Miracle Marrow Matches (A3M) Gala in downtown Los Angeles to share about Timothy’s success story. It was a wonderful and informative event. Personally, it was very emotional to be there and be surrounded by people who support this cause. We heard several testimonials, including a mom who had lost her daughter because they couldn’t find a donor, to a patient seeking a donor, and to a patient/donor meeting for the very first time. It was a full evening. After sharing about Timothy’s story, many people came up to us wanting to see Timothy and to even take pictures of him :). It was humbling. And we felt the love and support all over again. This time from strangers. Strangers who believed with us and walked with us through their support.
I have attached my speech here: (FYI, this is more for my record and for Timothy to see when he grows up :)). By the way, I was shaking the whole time I was up there, but Daniel said I was composed. Lol! It was in front of about 400 people.
Hello, my name is Alice and I am a parent of a transplant survivor. Our son Timothy was transplanted 2 ½ years ago at the age of 2 and is now healthy and thriving. Our journey has been tumultuous and challenging, but at the same time lined with hope and strength. Looking back, we are so thankful for everything that has happened. Please allow me to share a little bit of our story. Our son, Timothy, was diagnosed with a rare genetic disorder called Chronic Granulomatous Disease when he was 2 months old. Before his diagnosis, I had never heard of this disease and neither have most people. Except for the swollen lymph nodes, he looked fine. Outwardly, he looked well, but inside his body was broken and did not function properly. This disease would take his life prematurely while living in fear and dependent on medications. My life changed drastically from that moment on. My baby was sick and I needed to know what I needed to do. I had made many phone calls, emailed experts around the nation, and sought 2nd, 3rd and 4th opinions. I was on a mission to save my son. And for the most part, there was a consensus among the medical professionals. Bone Marrow Transplant. The only cure for my son’s disease. And the fact that there was a cure was a blessing in and of itself. We had hope. From this point, the search began. Timothy needed to find a match from an unrelated donor. So we contacted the Be the Match. And they connected us with A3M. A3M was instrumental in supporting us. Their Culturally Appropriate Patient Support Service contact was integral in connecting us with the right medium. We were in contact with the staff regularly and it was a tremendous support for our family. Currently, Be the Match has 11 million registrants. And NOT ONE matched our son. So we needed to register new members in order to find a match. Because Timothy is Korean, the chances of him finding a donor was higher within the Korean population. There are only about 90,000 Korean donors listed. Many drives were held all around Southern CA. We publicized in Korean newspapers, Korean news, and any and all forms of social media to spread the word. We could not have done this alone. The support system we had was wonderful. As a mom of a recipient, I cannot describe to you the relief and the gratitude I felt when we received the phone call that we had found a donor. It was a miracle. I still remember the day I received the phone call vividly. That moment is forever etched in my mind. It took us about a year to find a donor. And during that year, it was an emotional rollercoaster. To be a caretaker of a sick child takes a toll physically, emotionally and mentally. I had many good days, but also bad ones too. I would cry and then find strength to press on. As soon as we found a donor, we had 3 months to decide on our transplant center. Timothy received his transplant at Texas Children’s Hospital in Houston. Because of the rarity of his disease, many centers did not have the experience or the protocol for CGD transplant. We found TCH to have had a more extensive experience and felt confident in the team of doctors there. My prayer was that the transplant would be textbook. That everything would go according to plan as it should. Though we had some complications, they were minor. I know Timothy has endured through more pain and suffering than many people, but to see him smiling and living a normal life is all worth the pain and the tears. Our lives are changed for the better because Timothy was able to get the transplant. I cannot imagine my life without him. Today, he is affectionate, vibrant and silly. He loves attending preschool and enjoys life. Several months ago, we got in contact with our donor. It turns out that she lives in Germany. And ironically, she is not Korean in ethnicity. This happens only 15% of the time. So anyone can be a match with anyone. We are intricately connected to her because she gave our son a second chance in life. I think about our journey and it is a miracle that one person can save another person’s life. Thank you for being a part of this life-saving journey through your support. It takes an army of people to accomplish something like this. Our family, friends, church, doctors and nurses, A3M and supporters like you made this miracle possible. And it saved a boy’s life. There are many other families in need of support like us. And it’s amazing how we are all serviced through A3M. I believe that adversity brings people together. And this experience has been a blessing through trial. We have experienced love, support and newly formed relationships that wouldn’t have been forged otherwise. Thank you, we are forever grateful.
And a few more pictures from the evening…
Unfortunately, we forgot to take a family picture. Oh, well.