Help Us Help Bmo!

Can you believe that we Johnsons have been in the US for 3 months now? Those three months included the beginning of the school year, soccer season, college application deadlines, and Jed and I each taking a trip back to Ukraine to the Homestead, so to say the time has flown by would be putting it quite mildly. It feels like we just got here! How is it already November?

Boris (Bmo) has adjusted surprisingly well to life in Oregon and I think he really enjoys the stability of just being with his family every day all day. At the Homestead he would spend his weekdays at the Duplex with the other boys and the assistants, and while he seemed to do fine with that routine, I would say that he definitely seems more content just being home with us. One of the skills our boys developed in the institution was learning how to get their needs met by the many different people they encountered each day. You could call it manipulation, and yes, our boys can be master manipulators, but you could also just call it survival. In the face of such extreme neglect and abuse, reading the room and determining who would best meet your needs when you are completely powerless to meet those needs yourself is a skill that kept our boys alive for so many years. That’s not an exaggeration. Many of our friends who lived in the same building as our boys died of neglect, but the boys in our Wide Awake family did not. They found a way to get their basic needs met and they lived. It’s very difficult, and maybe currently impossible for them to turn that behavior off, even though they no longer need that survival skill in their day to day lives. For some of our boys, the fewer people meeting their needs, the better. When he is just home with us, Boris doesn’t need to focus as much on reading the room and seeing who he can manipulate into getting the things he wants or needs. He knows Jed and me and he knows the way our home operates. Will he still work the room and request cookies from every single one of the kids before resigning himself to the fact that his cookie quota for the day has been reached? Of course he will. But his people options are fewer and his environment is more predictable. Life at home with us day after day seems to suit him, and it suits us too. I love having Bmo home, taking him to football games and grocery stores. It’s the natural life together that we dreamed about all those years ago when we brought him home. Life in the Bmo-sphere is good.

Now that Boris is settled into his Oregon life and established with his primary care physician, it’s time to turn our attention toward the main reason we brought him here: to deal with his many health needs. We are currently residing in the land of amazing medical advancements and high standards of care and we must take advantage of this opportunity to get Bmo the help he needs to become the healthiest version of himself possible.

Achieving the dream of health and thriving for Boris is where you come in. My head is now above water and I can begin again in earnest, searching for generous medical professionals who would be willing to donate their time and resources to helping him. We were not able to find real help in Ukraine over the past 9 years, but I hope and pray we will find it for him here. I am aware that due to decades of neglect and abuse there are some broken parts that can not be healed, beyond an act of God, but I do believe there are interventions that could be undertaken that would improve Bmo’s quality of life and extend the number of years he will be with us here on earth. To that end, we are looking for hospital systems, doctors, and therapists who are willing to take on Boris as a charity case to provide him with the care he desperately needs. The help does not need to come only from medical professionals in Oregon. We are here in the US for the next few years and are willing and ready to travel with Boris to other states if necessary.

What is needed:

Orthopedic Specialist. Boris has an untreated (neglected) clubfoot. As Bmo has become more mobile over the years, his clubfoot has worsened. Probably 60% of the time he can walk on it “fine” (for him, of course he still has a significant limp and can only walk short distances), but the other 40% of the time he has significant pain when he walks and will at times refuse to put any weight on his foot at all. On those days he can only walk with a shoe on and is in obvious pain. That pain appears to be due to inflammation on the side of his foot/ankle. That impairment of his mobility is new since October 2024 and the redness, swelling, and pain come and go without any predictability. We are in need of a foot and ankle specialist or an orthopedist who would consult with us about the best course of action for Bmo’s foot. Perhaps surgery is a possibility? Or maybe that wouldn’t be recommended. The last orthopedic surgeon I saw in Ukraine recommended amputation, but ummmmm….yeah, I’d like second opinion on that one! Boris also has an arm that was broken at some point and didn’t heal correctly, as well as significant scoliosis. His little body has to hurt all the time. I want so badly to find some relief for him.

PS: Shriners hospitals are only for children and although they sometimes take on special cases they have denied our request. So for everyone who wants to recommend Shriners, thank you, but we’ve already tried. 😉

Gastroenterologist. Boris has dealt with significant gastrointestinal issues ever since we brought him out of the institution. I was never able to find effective treatment for him in Ukraine, and although we have made some strides with his primary physician here in Oregon (thank you Dr. North!), his doctor agrees that specialty care is needed. Boris has an enlarged, extra long colon and deals with significant bloating and chronic constipation. He also has problems with absorbing nutrition from the food he eats. Boris has weighed 70 pounds for the last 6 years, at least, and no matter what we feed him or how much he eats, he is not able to gain weight. We would appreciate very much the help of a gastroenterologist to find out what exactly is happening inside Bmo!

Physical Therapist, Occupational Therapist, Speech Pathologist. The help of qualified therapists would be so appreciated, in order for Boris to have the best quality of life possible. We have not found therapists in Ukraine who can work with Boris, due to his significant intellectual disability and the nature of those therapies in Ukraine. Honestly, it’s hard for me to even imagine how those types of therapies would help Boris, but I know that’s because I haven’t seen them really in action in an effective way. But I know Bmo’s world could be expanded and improved with the help of creative specialists and I would LOVE to see him valued in that way.

I have sent countless emails to different doctors and charitable organizations over the past few months and haven’t had any success finding help for Boris, but I trust that someone out there has the capability and desire to help- they just haven’t met Bmo yet! He is a survivor. He is strong and stubborn and deserving. His body is so broken and carries the scars of his former life. I know he is in pain every day and that there are people out there who can help him. We are willing to put in the time and effort to get him wherever he needs to be to get that help. We are committed to him and to his health. Would you help find specialists to partner with us?

Please feel free to pass this post on to anyone and everyone that could possible help. I have medical records available and am ready to answer any questions that medical professionals might have concerning Boris’ health. For anyone interested in learning more or taking Boris on as a charity case, please email me at kjohnson@wideawakeinternational.org

Thank you, Wide Awake Community for helping us find help for Bmo!