Fighting for Ruslan 💪
kimnjed
March 10, 2023
I know I’ve said it before, but here I am saying it again: our boys are superheroes. They really are! They are survivors. After all they endured while living in the institution, they still enjoy life and have learned to love and trust others, all the while daily overcoming the limitations of their physical bodies. They are forces to be reckoned with.
Our Ruslan is a mega-superhero. Is that a thing? Well, I just made it one. 🙂 He has a foot that is pretty severely deformed, and he has never had a shoe that actually fit, but he never ever complains about it. He has to limp when he walks, which over the years has transformed his hips and spine as he compensates for the limp, but he rarely even complains about any discomfort in his body. On the one hand it’s awesome because it just shows how strong he is. But on the other hand it’s sad, the fact that he has just adapted to the pain and has zero expectation that his body could change for the better. Ruslan has resigned himself to his broken body, but the rest of us have not. We want something better for him and won’t stop looking until we find a way to help.
It is not our practice at Wide Awake/Dim Hidnosti to immediately search in other countries for help for our boys, but to try to use only local resources whenever possible. One of our goals is to create something that can be replicated by Ukrainians in other parts of the country. If we rely too heavily on western help we are creating an unsustainable model that is only achievable with western connections. We want to be a spark of change in the culture here and are always on the lookout for local like-minded medical professionals who want to partner with us to help improve the lives of people with disabilities. At the same time, we recognize that this is an extremely difficult time here in Ukraine and sometimes outside help is what is needed. This is one of those moments.
Over the past four years we have searched and searched and have not been able to find any help for Ruslan here in Ukraine. Doctors don’t want to touch him and physical therapists say it is much too late for anything to be done. We tried to find a place where they could make him some special shoes, but only one company agreed to try and their attempt looked like Frankenstein shoes! I kid you not- they were like props from a horror movie. I think Rus lasted about 5 days before he just refused to put them on. They were so heavy and clunky (not to mention uuuuuuugly). He could barely walk in them. No other companies will even try to make shoes for Ruslan. Last week a PT told us “No one in Ukraine can help you. No one.” Hmmmm not exactly encouraging.
Alright, so we haven’t had any luck finding help here in Ukraine, but we refuse to just sit down and accept that. Rus is a young man and he has his whole life ahead of him. Surely we can do something to improve the quality of that life! If we don’t, his posture will only get worse and I fear that someday he won’t be able to walk anymore at all. We have to stay on this and not let it go.
So, now I’m coming to you, our awesome Wide Awake community. Will you help us search for help for Ruslan? We are looking for knowledgeable medical professionals who can become a resource for us and help us to understand the steps we should take to help Ruslan walk better and more comfortably. I have no idea what a solution for Rus even looks like.
Do we need to try to fix Ruslan’s foot with surgical interventions? If so, where can we do that? We need a surgeon to donate his time and a hospital to donate their facilities. Ruslan is a Ukrainian citizen, but he could easily get a visa to the US, for example, because Jed is his guardian and Jed is a US citizen. Several years ago we got a visa for Boris that way with zero problems.
Is surgery impossible or too big a risk and we need special shoes made? Great! Who can make the shoes and where do we need to go to make that happen? Our current solution is buying whatever shoe we find that will “semi” stay on his foot and then replacing it every 2-3 months because he walks a hole into it. Not to mention he has to stop every few meters and put his shoe back on because only the ball of his foot stays in the shoe.
Is there some sort of nonprofit out there that helps people like Ruslan and we need to start by connecting with them? Great! Send their contacts my way and I’ll get on it.
We have been advised by an American PT and by Ukrainian PT’s that no therapy will help Ruslan’s foot. Everything is fused in place and the foot is not flexible at all. PT is helpful for strengthening his leg and helping with his back, but as long as he limps the way he does, he will have problems with his hips and back. It seems that we’ve got to start with the foot.
If any of you have any connections to share with me I would greatly appreciate it. Please feel free to pass this need on to others. Surely, there’s got to be someone out there who knows how to help our guy. Let’s find that person together!
BeLOVE[d]
If you have any info or leads on help for Ruslan you can comment on this post or email me at kjohnson@wideawakeinternational.org Thanks!
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Have you contacted any Shriner’s Hospitals in the States about Ruslan’s foot? They did a couple of foot operations on my nephew when he was a child.
Hi! Yes, our Vlad has had a couple operations at Shriners and they were wonderful. Unfortunately, they only treat children.
There’s a patient referral form on a general Shriner’s Hospital website, https://www.shrinerschildrens.org/en/research-and-expertise/for-health-professionals/patient-referrals-and-transfers
Hi, thank you! Yes, we know Shriners, but unfortunately, they only treat children.
Many Polish children with clubfoot was successfully operated by dr Christof Radler in Vienna, Austria. You can also try to consult with Paley European Institute in Warsaw, they are making wonders.
Thank you so much for these ideas! I hadn’t heard about these places or doctors before. I emailed them over the weekend. Hopefully I’ll hear something back soon!
The Shriner’s hospital popped into my head, but I have no idea if they would have a solution, but I know they do wonderful things for many “kids”.
I wish I could suggest something more helpful, but might it be possible to try getting Ruslan to use crutches? I’m just thinking if he’s able to distribute his weight over the crutches it might help take some of the strain off his back and hips and make it easier for him to get around.
Thank you for your caring reply. I don’t think crutches for life would work for him, unfortunately. But we will keep searching for the right solution!
Have you contacted Joni and Friends? (Joni Earekson Tada). I will also share this post with a friend who is a podiatry nurse in Portland
Thank you for your amazing ministry,!
I’ve heard Dr. Dobbs in Palm Springs, is *THE* best of the best with club feet type orthopedic issues (in the U.S. at least). I’m not familiar with what type of ‘pro bono’ work he might be willing to do, but I seem to recall a friend of mine being able to just send him pictures via email or Facebook and he replied remarkably fast with his take on the situation (she had seen a zillion different doctors with her son and all hope was lost until Dr. Dobbs stepped in) – it might be worthwhile to at least try, to know what options he would suggest?
Thank you so much for this idea! I’m looking into it today.
It appears that he would most likely need some sort of surgery to release the tendons in his foot and ankle/leg in order to allow the foot to sit in a more natural position. I’m not sure what his bones look like but sometimes they will break and rearrange the bones if they have fused in a poor position or alignment as well. I think he’d need to see a highly qualified ankle and leg orthopedic surgeon; ideally one who’s worked with people with high tone/ cp/ spasticity. Then an AFO or other orthotic would probably be recommend to help maintain the position and assist with walking.
I’m not sure if this thought reached you, but I’m wondering if Joni and Friends would have ideas for resources. Praying for Ruslan and for you as you seek guidance!
That is actually a really great idea. Thank you for that!