Henry Hong-Joo Kim

As you may or may not know, my twin sister, Sunhee, gave birth to Henry Hong-Joo Kim on November 5th. Unfortunately Henry was born with major heath issues as described to us in an email from his dad

 

"All,

 

As many of you already know, Sunhee and I were overjoyed to welcome our son, Henry Hong-Joo, to the world on Friday, November 5th. While our hearts were flooded with excitement to meet our adorable son, he’s already had a rough start to life. Many of you have reached out to ask how he is doing, so we wanted to send you this email to provide an update on Hong-Joo’s current health status.

 

After being born, Hong-Joo was sent directly to the NICU where he is still at. Our immediate concerns are with his breathing and feeding. He’s mostly able to breathe on his own, but he does need some assistance, so they don’t want to send him home until he’s independent of any breathing assistance. We’re awaiting the results of more tests to determine exactly the cause of his breathing and feeding issues, but it appears that there may be excess tissue causing obstruction in his airway and making it difficult for him to swallow.

 

What has been more emotionally taxing, though, are the long-term health challenges that he is poised to face. After numerous tests and meetings with various health professionals, the combination of his challenges made the geneticists highly suspicious that he had a genetic disorder called CHARGE Syndrome, a diagnosis that was confirmed about a week and a half later. Only around 1 in 10,000 babies are born with CHARGE. While we were saddened to hear about all the various ailments that are expressions of CHARGE, the most difficult moments were when we learned that he had “profound” hearing and vision loss. In short, Hong-Joo is both deaf and blind.

 

I cannot put into words the grief we felt when we learned this about our beloved baby boy. Our hearts sank and it was impossible to hold back the weight of the disappointment and sadness we both felt.

 

For Sunhee and me, we are slowly adjusting the expectations that we have for the kind of life Hong-Joo will live. This is definitely not the kind of life that we had hoped for and dreamt of as we were awaiting his arrival. Despite the emotionally exhausting news we’ve received about both his current and long-term health challenges, we are absolutely committed to loving him, supporting him, and offering him a life that will be full of joy, happiness, accomplishments, and miracles. The last three weeks have been undoubtedly the most devastating of our lives. But, what’s even greater than our devastation is the depth of love and affection we have for our strong, resilient Hong-Joo. Every morning we are filled with excitement to go see him and hold him and shower him with kisses. We love seeing him pucker his lips or inadvertently give us the middle finger or give us his old, grumpy man look when we change his diapers. Some days are harder than others, for sure, but every day we are truly blessed to have such a funny, adorable, and loveable son, and we cannot wait for you all to meet him one day soon. We promise, you will be blessed by him too.

 

With love,

 

Andrew and Sunhee"

 

Ever since this email was sent, Henry has his good and bad days. He continues to go in and out of surgeries and procedures.

It is expected that their family will be in the hospital for at least another few months, followed by around the clock care. Thankfully, Henry seems to be in good hands, as the doctors and the staff seem to be doing a wonderful job. However, the out-of-pocket costs are adding up and will continue to increase. I thought it would be helpful if some of his friends and friends-of-friends could chip in if they are able do so at this time. I'm sure if you reach out to him with some words of encouragement that would be much appreciated as well.

 

Thank you!