Eugene Cho

a 5-year-old boy named connor

I’ve not had the privilege of meeting Connor – a 5 year old boy who has a disease called X-linked hyper IGM. It literally affects about one in a million. I know good friends that know Connor and his family. And when I heard about Connor’s story, I was moved to tears – I’m a father and if I’m honest, losing a child is the unfathomable pain.

Connor’s family is not asking for your money or sympathies. They’re simply asking for you to get your bone marrow typed and join a bone marrow registry. This is especially critical for those who are people of color simply because there are so few minority bone marrow registrants.

I’m asking for couple more things:

  1. Check out their website.
  2. Please watch their 1 minute video below. (click here if you’re reading this via RSS)
  3. Lift a prayer for Connor and his family. And when there are those around you in similar situations, do something.

Here’s a fuller perspective of Connor’s story and 5 practical things you can do to help?

Our precious son is in the fight of his life and he doesn’t even know it – he is only 5 years old.  All he knows is that he cannot go to school, that he cannot swim, that he needs to go to the hospital and get “poked” every month, and that he needs to take his “yucky” medicine 4 times a week.

When Connor was first born, we were so happy and grateful that we were blessed with the most beautiful and healthy baby boy (7 pounds, 14 ounces, 21 inches and an apgar score of 9 out of 10).  We were the luckiest people on earth. He fulfilled all my wishes and dreams of being a mother.  He was good-natured, ate well, slept well and was such a happy baby.  His smiles lit up the room and my heart.  Connor brings so much laughter and joy to our lives that we can’t even remember what our lives were like without him.

Connor has endured more medical procedures than most people I know.  At just 2 years of age he underwent surgery to remove his adenoids and insert tubes in his ears.  Recently, he had to have a bone marrow biopsy, colonoscopy, endoscopy, gastrointestinal testing, biopsies and chest x-rays.  He suffered through at least 30 ear infections up to this point, bleeding from his ears, 105 degree fevers, numerous E.R. visits, over 50 anitbiotics, and hospitalization for an infection that required IV antibiotics and isolation for 4 days.

The pediatricians kept reassuring us that this was “normal” and that the tubes should fix things. When the tubes failed within the first 2 weeks, we were referred to a pediatrician specializing in infectious diseases and an immunologist.  After numerous lab tests, we were told that his body does not make IgG (a type of antibody, that is used as a defense against viruses and bacteria).  He has been on IVIG treatment ever since, where we go into the hospital every 3 or 4 weeks, and he gets an IV infusion of IgG for 4-5 hours.  As a result, his health has dramatically improved.

In May 2009, the doctors at Cincinnati Children’s Hospital diagnosed him with X-linked Hyper IgM syndrome.  It came as a complete shock!  This disease affects mostly boys and is so rare that there are less than 300 people living with this disease.  The median age of someone with this disease is 25 years old.

THE ONLY DEFINITIVE CURE IS A BONE MARROW TRANSPLANT.  The biggest risk factors are contracting an infection that his body can’t fight, mainly pneumonia, or this disease turning into some sort of malignancy in his liver, pancreas or gastro-intestinal system.  The long-term prognosis for Connor’s condition if left untreated is an unbearable thought.

Our only hope for Connor is a successful bone marrow transplant.  Please help us and others like Connor by registering to become a bone marrow donor.  It is the only hope that we have for our son.  We are desperately pleading for more donors so that our baby can live a long and prosperous life.

Filed under: , ,

stuff, connect, info

One Day’s Wages

My Instagram

Today, Minhee and I dropped off our eldest child at her college. We have been thinking and praying about this day for many years. On some days, we hoped it would never come. On other days, we couldn't wait for it to come. On some days, we prayed for time to stop and other days, we prayed with anticipation. 
After an entire summer of laughing it off, it hit us...hard...this week. Seeing all of her stuff laid out on the basement floor was the catalyst to a load of emotions.

After unloading the car and taking her stuff to her new home for this year and mindful that she might never live with us again; helping sort out her stuff, saying hello to her roommates...I wasn't sure what to do or say.

A flood of thoughts rushed my mind.

Is she ready?
Have we done enough?
Have we taught her enough? 
What if this? What if that?

And so we shared what we have shared with her the moment she began to understand words: "Remember who you are. Remember WHO you belong to. Remember what you're about. God loves you so much. Please hold God's Word and His promises close and dear to your heart. We love you so much and we are so proud of you." And with that, we said goodbye. Even if she may not be thousands of miles away, this is a new chapter for her and even for us. I kept it composed. Her roommate was staring at me. I didn't want to be that father. I have street cred to uphold. Another final hug. 
And I came home.
And I wept.
Forget my street cred.
I miss her. I love her.
She will always be my little baby.

I'm no parenting guru. I just laughed as I wrote that line. No, I'm stumbling and bumbling along but I'd love to share an ephiphany I learned not that long ago. Coming to this realization was incredibly painful but simultaneously, liberating. To be honest, it was the ultimate game-changer in my understanding as a parent seeking after the heart of God.

While there are many methods, tools, philosophies, and biblical principles to parenting, there is – in my opinion – only one purpose or destination.

Our purpose as parents is to eventually…release them. Send forth. For His glory. Met a friend and fellow pastor who I haven't seen in over 20 years. In him, I saw a glimpse of my future. While only 10 years older, his kids are married and he's now a grandfather of 3. His love for his wife and family were so evident and his passion for the Gospel has not wavered. It was so good to see someone a bit older still passionately serving the Lord with such joy and faithfulness. Lord, help me to keep running the race for your Glory. Happy wife.
Happy life. - Eugenius 3:16

I still remember that time, many years ago, when Minhee was pregnant with our first child. She had left her family and friends in Korea just two years before. Her morning sickness was horrible and when she finally had an appetite, she craved her favorite Korean food from certain restaurants in her neighborhood in Seoul, Korea. I had no way of getting that food from those restaurants so I actually said, "How about a Whopper? Big Mac?" Sorry honey. Eat away. You deserve it. I don't care if it sounds mushy but sunsets are one of my love languages. Seoul, Korea was amazing but WOW...what a breathtaking welcome back sunset by Seattle. Not ready to let go of summer. Seattle. 7:00pm. Desperately holding on to summer. #goldengardenpark #nofilter Happy Birthday, Minhee! I'm so grateful for you. You radiate faith, hope, and love. don't complete me. That would be silly and simply humanly impossible but you keep pointing me and our family to Christ who informs and transforms our lives, marriage, family, and ministry. Thanks for being so faithful. I love you so much. (* And what a gift to be in Korea together.)

my tweets



Blog Stats

  • 3,417,976 hits