Levi "LEVINATOR" Ervin: A Story of Cerebral Palsy
March is Cerebral Palsy Awareness Month. We feature Levi "Levinator" Ervin and his mom Dana Kramer who continue to break the rules and challenge perceptions. This young man has all kinds of goodies to share with us. Here is a snippet from our technical run this evening.
Levi Kramer and Blaze Sports
Levi was born 3 months early and suffered a Grade 1 brain bleed. Levi was diagnosed at 13 months old with an MRI showing that he has spastic diplegia cerebral palsy. At age two Levi underwent a selective dorsal rhizotomy surgery at St. Louis children’s hospital by Dr. Park. At age six Levi had his left hip socket deepened, his left femur rotated, and both Achilles’ tendons lengthened.His walking has really took off! He can now at age eight walk unassisted, walk with a single arm crutch cane, and long distances with his walker. He no longer uses his wheelchair for school, only for all day outings.Levi plays wheelchair basketball for the Blazesports organization. Our team, the Jr. Atlanta Hawks, competes with the National Wheelchair Basketball Association.The teams consist of children with lower extremity disabilities. The season starts in September and we play tournaments through February to place in the national tournament.This year our team is 2nd in the nation. We go to nationals on March 12-15th! Go Jr. Hawks!!!"Cerebral palsy does not define Levi but it is a part of him and we both embrace it daily! It will never hold Levi back but it may slow him down and that’s ok!" Dana KramerLevi is also involved in another organization called Extra Special People, located In Watkinsville, Ga. The facility is open to all ages and all disabilities. They offer summer day camps and an overnight week camp. They have after school programs available such as clubs and activities. Esp has also started an adult job opportunity through their newest endeavor which is called Java joy! A traveling coffee tent that is expanding into California!Each year ESP host the biggest fundraiser in our area, called Big Hearts! Levi loves this event! Last year he raised over $5,000 and won the People’s Choice award! This year Levi was a contestant, his talent was a magician! He performed the best show! He won Little Mr. Northeast Ga in his age group! The event showcases 70 participants and their talents! Levi is in a mainstream 3rd grade classroom. He has a special in class para pro that assist him throughout his day. At school Levi is also involved in all advanced classes. He is in the robotics club. Levi also is in the honor chorus! Levi lives a busy life and loves every second of it! Cerebral palsy does not define Levi but it is a part of him and we both embrace it daily! It will never hold Levi back but it may slow him down and that’s ok!
Levi Kramer
Transcript
Marsh Naidoo (00:05):
Welcome to this episode of Raising Kellan, the podcast to motivate, inspire, and educate parents, raising kids with special needs. I am your host, Marsh Naidoo. I would love to introduce to you Levi Ervin and his mom Dana Kramer from Rogersville, Georgia, just outside Atlanta. Listen here guys, this is cerebral palsy awareness man. And we are going to celebrate how positively we live our lives and I can't think of any better example than You'all.
Dana Kramer (00:43):
Yes, thank you so much for having us. We're really excited to share our story with everyone. Thank
Levi Ervin (00:49):
You for having us and I'm excited to share my story.
Marsh Naidoo (00:52):
Well, let's just go ahead and kick off with it. Levi, introduce yourself to our guest.
Levi Ervin (00:59):
So my name is Levi Ervin. I'm eight years old. I have cerebral palsy. What I'm gonna be doing today is talking to you guys.
Marsh Naidoo (01:09):
I promise I'm gonna start off nice and simple and easy. Okay. Tell us about school. What's going on at school right now, hun?
Levi Ervin (01:18):
I'm doing good and we're thinking about things such as the isis so I won't have to do the writing on my papers so I won't fall behind and stuff like that.
Marsh Naidoo (01:30):
From what I understand, you are in a mainstream class and do you have someone that's perhaps helping you?
Levi Ervin (01:36):
Yes, I have a parapro. Her name is Ms. Worley. That is pretty much how that works.
Dana Kramer (01:42):
Miss Worley is his in-classroom pair Pro. So she's in the classroom to help Levi and the other students as they need it. He used to have a one on one aid, but we've since moved up to just having the in class pair. So she really helps Levi with verbal cues. Transitioning. What else? Lunch tray. She's amazing. She is my right hand man. We couldn't do this without her. We give a lot. You
Levi Ervin (02:16):
Mean
Dana Kramer (02:17):
Right hand woman?
Levi Ervin (02:18):
Yeah.
Dana Kramer (02:19):
We give a lot of credit to Rita Worley. She is absolutely an amazing woman.
Marsh Naidoo (02:24):
Which school do you go to, Levi?
Levi Ervin (02:27):
I go to South Jackson Elementary School.
Marsh Naidoo (02:30):
And about how many kids are they in your class? Hun?
Levi Ervin (02:33):
26 in math cuz we have a student that comes over. But total and all other subjects would be a total of 25.
Marsh Naidoo (02:41):
And what's your favorite?
Levi Ervin (02:43):
My favorite subject would be probably math.
Marsh Naidoo (02:47):
So what's this idea about Robotics? Can you tell me about Robotics?
Levi Ervin (02:52):
What I do is I'll enter this simple coding app, but we will drag these blocks over and then connect to our robot and then it'll tell it what to
Dana Kramer (03:02):
Do. So robotics is an after school club? Let's see. The school competes, right? Yeah,
Levi Ervin (03:08):
We compete. Fun fact, we are actually having competition the next Wednesday.
Dana Kramer (03:13):
Oh wow.
Levi Ervin (03:14):
So we're gonna go to robotics that day and then later at nine we're gonna the competition.
Dana Kramer (03:20):
That's exciting. I didn't even know that. Basically they have a maze and they do coding to get their robot to go through the maze and get to the end, the finish line.
Levi Ervin (03:30):
<affirmative>. And there are a lot of complicated rules to competitions such as you can't get on the mat and anything like that.
Dana Kramer (03:38):
Lot of stuff that you've had to learn,
Levi Ervin (03:40):
Susan, then you'll get disqualified and what stuff like that. Probably be sitting here for an hour if I talk about it all.
Marsh Naidoo (03:46):
<laugh>. Okay, so let's move on from robotics then Dana. I guess it's social media that brought us together.
Dana Kramer (03:54):
So we got Instagram in August I think is when we started his. I have a Facebook and so a lot of our started out family and friends would look at our Facebook and then Levi was trying to take over my Facebook account. So we just decided my
Levi Ervin (04:12):
Mom made me an, I
Dana Kramer (04:14):
Have
Levi Ervin (04:15):
To have my own platform on social media.
Dana Kramer (04:16):
Totally. But we kind of do it together. Obviously he's eight. I do manage everyone that talks to him or anything like that. But I think we saw your Raising Kellan on Instagram and it was just
Levi Ervin (04:28):
My mom says that Ill be able to run it. I get
Dana Kramer (04:32):
Yeah, maybe when you get a lot older <laugh>.
Marsh Naidoo (04:36):
But I think what really kind attracts me to your guys page was the fact that you are always doing something exciting. Something that I'm like, I can't believe these guys are doing this <laugh> I Fly event that you guys did I think about two or three months ago. Tell the listeners about that because that is something totally foreign to me and I would love to learn more about that concept.
Dana Kramer (05:07):
We have a friend, his name is Landon and it was his birthday party and his mother reached out. We have a place here in Atlanta called I Fly, it's indoor skydiving facility. Landon, our buddy is a little bit more severe and his mom called and made sure that they accommodated a special needs. So she called Levi and invited us. That was a pretty awesome day. It was so cool. I remember the anxiety on the way there. And you may have not even known this Levi, but I was really nervous thinking, how is his muscle tone gonna do inside this air tunnel? Is he going to be able to hold his arm steady? Just the normal mother fears. I like to push sleep but I still am his mom so I still have those thoughts that you go to. But we got there and it was awesome wasn't it?
Levi Ervin (06:04):
Yeah, probably one of the funest things that I've forget in my whole life. That was so fun.
Marsh Naidoo (06:08):
What did it feel like being in that? It
Levi Ervin (06:12):
Tell you something hilarious. I was in there in, I know my first thing, my shoe fell off and the guy went in there, swooped up and grabbed it. It was so cool.
Dana Kramer (06:23):
<laugh> an aero tunnel. So I think in the bottom is high powered fans and it's blowing the air up. They did a quick little class to kind of teach 'em of how to hold their body and little hand signals so the guy can communicate to them inside the tunnel.
Levi Ervin (06:40):
Cause with all the air you can't
Dana Kramer (06:43):
Communicate. Levi, what did your muscles feel like when you were inside of it?
Levi Ervin (06:47):
I felt pretty much normal other than I was floating
Dana Kramer (06:50):
<laugh>
Marsh Naidoo (06:51):
And now guys. E S P?
Dana Kramer (06:53):
Yes. Extra special people.
Marsh Naidoo (06:56):
Tell me more about that.
Dana Kramer (06:58):
So it's a facility that's close to where we live. We actually found out about it through our challenger baseball league that Levi plays on. So there's another boy that everyone in Watkinsville is well known. His name is Coolman Colin. He also has cerebral palsy. So Colin told me about ESP and he said Dana, I think that Levi would really love this. It's a summer, they do summer camp. So me and Levi went tos P and we sat down, had a meeting with them. It was life changing for us. It really was. We hadn't found anything yet. That was our first thing. Challenger Baseball League was our first thing we found and then it kind of went from there. Buts P gave us so many options. They have summer camps, they do after school programs, like clubs, activities. They do stuff all year long as well.
(07:54):
Like a fall festival. We go there to get pictures with Santa Claus. It's a lot easier than going to the mall. So it's just very accommodating. It's all ages, all disabilities. And they actually just ventured out with an business opportunity for their adult participants. It's called Java Joy. It's like a coffee tent that you rent and in your business. And then so you get coffee and you get a hug. Cool man. Collins in that TV's one of the first joys, but it's pretty neat. It's going to California now. An investor out there picked it up and they're starting it. It's pretty amazing. Can I speak? Yep, you can speak. Okay.
Levi Ervin (08:35):
So speaking of podcast, ESP has their own podcasts. P had altered my life.
Marsh Naidoo (08:43):
Have you formed friendships with other kids that go to asb? Levi?
Levi Ervin (08:48):
That's how I met Landon.
Marsh Naidoo (08:50):
Okay, so that's it's definitely been a bonus then, hasn't it? Let's talk about play sports and the road to the nationals.
Levi Ervin (09:00):
Okay,
Dana Kramer (09:01):
<laugh>,
Marsh Naidoo (09:04):
The listeners out there, they can't see Levi. He is smiling. Yeah, to yeah, that's how big this voice smiles right now.
Dana Kramer (09:12):
Levi, are you good with me kind of talking about play sports for a second? I wanna talk about it. Talk basketball. Okay, well then tell about sports. They wanna hear about it.
Levi Ervin (09:22):
So sports is this great organization that will give sports to kids and my very curious mind, which I was already into baseball, I said what? I drive up basketball. So I entered a wheelchair basketball, been playing for about three years and having my first nationals this year that I'm going to, it is in Wichita, Kansas. We are gonna fly to Wichita, Kansas, <laugh> and we're going nationals second in the nation. Hopefully we win first. Very hopefully
Dana Kramer (09:59):
<laugh>. So like Levi said, it is for, it's for lower extremity disabilities and it's also not just for children but for veterans as well, which is really cool. And so that's also located in Atlanta, Blaze Sports of America. They give, they also do track. They have swimming, they have rock climbing. So who knows what we'll try in the future.
Marsh Naidoo (10:26):
Try next.
Dana Kramer (10:27):
<laugh>.
Levi Ervin (10:28):
Oh why probably.
Marsh Naidoo (10:30):
So Levi, what I've gone hidden done is that I've written up blog about all the cool staff you do and I've put that on the Raising Kellan website. I'm asking all of you listeners out there to please follow these young men and women as they hit the road to Wita from the 12th to the 15th of March. And please give them your support. So we've talked about the basketball, we talked about E S P, Anything else that you wanna tell me about that You up to Levi
Levi Ervin (11:05):
Now before we end the show, I wanted to mention my Instagram.
Marsh Naidoo (11:12):
We follow you. Okay.
Levi Ervin (11:15):
Another other thing, this is gonna be my first time flying that I remember as a baby. I flew, but I don't remember that.
Dana Kramer (11:24):
What were we flying for when you were a baby
Levi Ervin (11:27):
For my surgery? I don't quite remember.
Dana Kramer (11:29):
Do you remember what the surgery was called?
Levi Ervin (11:32):
SDR?
Dana Kramer (11:32):
Yes. So Levi had selective dorsal rhizotomy at two years old. I'd really like to touch on that for a second. The SDR was a game changer for Levi. So prior to two years old, Levi couldn't sit. He didn't really feel pain. So when he would get shots or get blood, there was no crying, no reaction. And
Levi Ervin (11:59):
The doctors called me the kid cuz I couldn't even fill the shot so I wouldn't
Dana Kramer (12:04):
Cry. Yes. But there was so much that I honestly, I don't think that he would be walking had we not had this surgery. But so one of our specialist doctors kind of let us know about it. I did a lot of research and I found Dr. Park at St. Louis Children's Hospital. He is,
Levi Ervin (12:32):
Congratulations to this man.
Dana Kramer (12:34):
Yeah, we love Dr. Park. He is an amazing man and I truly feel that God works through this surgeon. Like, oh man, he's amazing. So if there's any parents out there and your child's young, you have this spasticity, very extensive. I know that parents may be thinking, I don't even know about this cerebral palsy yet and now I need to think of a surgery. But you send in a very extensive video application to Dr. Park that he reviews and he only chooses candidates that it's going to benefit. So it's not going into it blindly. Obviously he would tell you if it's not gonna benefit your child, but we do know a lot of quadriplegics and DICs that have had this. So it's readily available and it's something to look into. I, let's see. So we had to go outta state and the surgery is not covered by insurance. It was $37,000 surgery. And my
Levi Ervin (13:37):
Great mom over here did a ton of fundraisers and raised
Dana Kramer (13:40):
The month. I was 28 years old and was in college and I got the call from Dr. Park and they said, we Levi's an amazing candidate, we want him here. Can you have the money in one month? I mean, I said yes, we'll be there. And I hung up the phone and I went back in my class and I picked up my books and I left. And that is the last day that I was in college. I quit right then. And the next month was just fundraisers like crazy, which I don't remember this, but she knows <laugh>. I don't, Yes we did bait sales, golf tournaments. I mean it sounds unimaginable, but if you are a parent you can get it done. There's GoFundMe, there's so many ways, but I just wanna touch real fast. I remember when Levi, we got there and you meet Dr.
(14:40):
Park the day before and you speak with this man for maybe 30 minutes. So you meet him, you go back to your hotel and the next morning you come in and you have the surgery. You know, don't get tons of time or a special moment with this doctor because you are outta state and you're only seeing him for a second. But I can tell you in that 30 minutes with Dr. Park, he brought every concern that I had just to ease. He walked me through what was gonna happen. Very knowledgeable man, very great bedside manner. We felt really good going into it. And the last thing I wanna say is, cuz this was something I'll never forget. When Levi woke up from the surgery, me and my mother and Levi's father were all in the room. I just reached out as a mom to touch him. I just wanted to touch my son and make sure that he's okay. Well I touched his foot and he said, Ow mommy, that hurts. And I remember pulling my hand back and the doctor looked at me and he said, It doesn't hurt, it's a tickle. And he's never felt sensation like that.
Levi Ervin (15:52):
And you were freaking, and I don't even remember any of this, but I know you were freaking out.
Dana Kramer (15:59):
I was totally freaking out. So the SD Dr. Park goes into the spine and he removes the piece of the bone and he tests the nerve endings that are spastic and he actually cuts those nerve endings. So for Levi, 12 nerve endings were cut. And it was almost after the surgery, there was just no muscle strength because they were completely cut. And then we did intense, intense therapy five days a week, two hours a day.
Levi Ervin (16:30):
I just remember this how crazy it was,
Dana Kramer (16:34):
Yes, to build up the muscle strength. And I think it was a very long journey. But I think at four years old, Levi took his very first independent steps with no assistance. What
Marsh Naidoo (16:48):
Would be your take home message to mom and or yess?
Dana Kramer (16:53):
I guess I would like to talk a little bit about the diagnosis moment. That was a big moment for me. So I think for any parent, the unknown is obviously very fearful, but when you receive the diagnosis, there's a point of processing. And as a mother, I can go back to that day and for a moment, and Levi, you let me, this may be confusing to you, but the moms and dads will understand. In that moment, everything kind of just stopped. Life just stopped when the doctor told me Levi has cerebral palsy and he's never going to walk, talk he shit, sleep <laugh>. He didn't say you were gonna die. He just said that he may not walk and talk. And in that moment it's hard to process that. You carry something inside you and you have dreams and aspirations. And
Levi Ervin (17:57):
Look at
Dana Kramer (17:57):
Me now, right? That's what I wanna get at to the parents. And that moment is very hard, but it's not
Levi Ervin (18:05):
Always the
Dana Kramer (18:06):
Truth. That's not the end. There's a lot more. And I had to go through a process of accepting it. And I wanna say that to other parents, you gotta accept the diagnosis and you've got to lean on friends and family and Jesus. And you gotta look for the positive because it's there. It's just gonna be different than you had imagined. And that was really hard just to change. It just changes your aspirations, your thoughts, your dreams. But it's turned out pretty awesome.
Levi Ervin (18:46):
And even I had to say, tell myself I have cerebral palsy. Let's face that it's happened, it's done. But I'm not gonna let that define me. And that's exactly what I thought. My brain. And so far that's going pretty good.
Marsh Naidoo (19:06):
I would say so young man. So do you do that? Do you tell your mind, look great, I need to do this so I need to do that. Do you talk to yourself that way Levi?
Levi Ervin (19:17):
Oh my gosh, you could ask my mom. I talked to myself 27
Dana Kramer (19:23):
<laugh>. Levi is an avid talk to yourself type of individual.
Levi Ervin (19:28):
My mom hear me speaking to nothing and she was like, What are you doing? I'm like, I'm talking to myself
Dana Kramer (19:35):
<laugh>. He does a lot of self-affirmations and self -calming methods
Levi Ervin (19:42):
When I'm sit in my room mad cuz I just got in trouble. I'm like, Okay, let's face it, I'm in trouble. Sit here, think about what's wrong about what we did.
Dana Kramer (19:53):
And so emotions are a little challenging at times. That's why he's saying for example, if he was in trouble, whereas, well, I don't know. Cause I don't have child sad
Levi Ervin (20:07):
Mixed with
Dana Kramer (20:08):
Anger. Yeah, I see typical parents be able to tell their typical child, raise their voice at him or whatever, and the kid gets sad, but they walk away. For Levi, I have to be very careful because he can go from zero to 10 instantly. If he can laugh so hard, he can't stop laughing. He can cry so hard that he can't stop crying. So emotions are a struggle for him. And he does a lot of the talking to himself and self-calming through that. Absolutely. To kind of get through those emotions.
Levi Ervin (20:41):
If my mom raises her voice at me, I will start busting out crying
Dana Kramer (20:45):
<laugh>. But you've come a long way. It's definitely at a younger age it was pretty intense. But now at eight he's really finding his way to control these emotions and I'm super proud of you for that.
Levi Ervin (20:59):
Which we still even talk about. My mom still has to verbally you say, control your emotions. And I had to sit there and think, Control your emotion. Control your emotions. Control your emotions.
Dana Kramer (21:12):
Oh my
Marsh Naidoo (21:13):
Goodness.
Dana Kramer (21:15):
So all those parents out there that may have nonverbal kids, the grass is always greener as you hear...
Marsh Naidoo (21:26):
What do you have to tell other young CP warriors out there? What would be your message to them? Sir,
Levi Ervin (21:35):
You can do it. It could be hard, but you can do what you set your mind to no matter what.
Dana Kramer (21:45):
Yes,
Marsh Naidoo (21:46):
Absolutely. Well guys, your story is out on the blog at raisingkellamn.org Levi, give me your Instagram handle again.
Levi Ervin (21:59):
My Instagram is at Live by CP Life. Please follow me,
Marsh Naidoo (22:03):
Dana, any last words my dear, before we get ready to close out?
Dana Kramer (22:08):
Yeah, I just wanna et all the other parents out there know you're not alone in this journey. And so to be strong enough to carry on for your child, I suggest reach out in social media and there's plenty of us out there and you hear all the time it takes a village. Well it definitely takes a village with special needs. So reach out, look at other people's journeys and just know that social
Levi Ervin (22:40):
Media has
Dana Kramer (22:40):
Gone, This is my question, <laugh>, trying strong for your children and try to find the light and look for the good. And my biggest advice is don't compare. It's just not worth it. Don't compare. Live in the moment. Enjoy the milestones as they come because they're all so important. Right?
Levi Ervin (23:11):
<affirmative>,
Marsh Naidoo (23:12):
Thank you all so much for sitting down and chatting with me this evening. And we have come to the end of another podcast and as always remember, get to the top of that mountain. This is Marsh signing off.
