2Endure Perthes was able to honor our first 5 fellow Perthes kids on a rock climb recently. Each child has been sent a portion of the prayer flag that was brought up on the climb. Take a moment to read their brief stories below along with a story about the climb.
What is Perthes Disease?
Legg-Calve-Perthes (LEG-kahl-VAY-PER-tuz) disease is a childhood condition that occurs when blood supply to the ball part (femoral head) of the hip joint is temporarily interrupted and the bone begins to die. It affects 1-20,000 children. The hip is made up of the femoral head — the “ball,” which is the upper part of the femur — and the acetabulum — the “cup” that fits around the femoral head.
In Perthes disease, the blood supply to the head of the femur is interrupted. The femoral head then “necroses,” or loses blood supply, which weakens the bone and can lead to multiple fractures. Next, the bone is taken up by the body, or resorbed, which can lead to a complete collapse of the femoral head.
The blood supply does eventually return and the bone will re-form, or re-ossify. However, the bone may re-form with a different shape than it had before. Because of this, degenerative joint disease can develop later in life.
The Perthes Kids stories
First Perthes Kiddo: Caden from Alaska
Caden is 6 years old and lives in Alaska. In March of 2020 he was diagnosed with Legge Calve Perthes in his right hip.
Second Perthes Kiddo: Luke from Oklahoma
Luke is from Oklahoma and was diagnosed with Perthes in his left hip this past Jan. 19th. His favorite hobby is basketball.
Third Perthes Kiddo: Vincent from California
Vincent is from California and was diagnosed with LCPD on July 19th 2019 in his left hip. He aspires to be an investor and/or an electrical engineer.
“Hello my son was diagnosed July 2019. He has Perthes in his left leg. We choose against surgery so he has been in a wheelchair since July 19 2019, 3 days before his 9th birthday. We found out last appointment he started regrowth stage. Vincent works hard everyday. Monday thru Sunday his swims for one hour and two hours on the weekend. He also doesn't give me hassle when I have to stretch his legs 3/4 times a day. Vincent played soccer since he was three and played his last season right before he was diagnosed. I remember asking him when he was 5 if he wanted to try another sport and quickly he said why would anyone want to do any other sport. He loved soccer very much and he was super good despite his size. His bone age has always been two years behind. A few times at games parents would scream don't let him take that ball his smaller than you. Vincent never let the comments bother him he just tired harder and took the ball a lot of the time. Some parents were kind and after the game would come up to him and shake his hand and let him know he was a great player.” Andrea, Vincent’s Mom.
Fourth Perthes Kiddo: Julie from Arizona
Good morning this is Tonia Larson from Facebook. My daughter's name is Julie and we live in Az. She was diagnosed with LCPD on September 4, 2018.
Julie's LCPD is in her right hip and unfortunately she has been classified as worst case scenario. To date she has had a ton of testing (MRI, Ct Scans, X-Rays). Julie has had arthrograms with steroid injections and a Valgus Extension Osteotomy done in June of 2020. We are looking to get the hardware removed in May of 2021. Julie has developed an issue with her intestines and her stomach, due to use of Motrin. Her pain along this journey has been mostly uncontrollable. She has severe eye issues that have developed over the last 2 years, she has Raynaud's Phenomenon, ADHD, Nerve issues and has been doing connective tissue tests as well as genetics. She sees specialists that help her learn to mentally deal with the pain so that she can stay away from medicines. She was a very active kid before diagnosis and now they are telling her she may never be able to do things that are "Normal". She is upset a lot of the time especially because she cannot do the things her sibling, cousins or friends at school can do. With all of the other health issues she feels very incompetent and sad. She tries to have a positive outlook and not let things get her down though. When she grows up she wants to be a veterinarian. Her favorite things are cats and unicorns and her favorite colors are blue and purple. She would definitely prefer the ice climbing. She loves snow. - Tonia Larson - Julies Mom
5th Perthes Kid: Wyatt from Kansas
Last but certainly not least. Wyatt is from Kansas and was diagnosed in May of 2019 with Perthes in his left hip. He enjoys archery, lightsaber battles and fighting zombies. He dreams of running on the beach in Ocean City, NJ again some day. His favorite super hero is Flash (because he can run really fast!). Wyatt has a vision of running marathons in the future.
Wyatt was diagnosed when he was 7 1/2 years old with LCPD in his left hip. As his disease progressed, the femoral head in that leg deteriorated and collapsed past the growth plate. They consider this a Sever case so we elected to have an osteotomy. Wyatt's surgery was June of 2020. Post-surgery Wyatt had to be non-weight bearing for 12 weeks. He will have a surgery in 2022 to remove the hardware from his first surgery.
His favorite super hero is Flash. He used to wear a Flash costume every day and even when he started limping, still insisted that he had super speed. Post surgery, Wyatt is not very physical anymore. Wyatt attends PT in the pool once a week and does exercises for stretching his hip several times a week. He never tells me his leg hurts, even when I can tell that his limp is really bad. He does not like to take medication for pain so is a very tough guy. He still lets me film videos of him running like Flash, but now we record them on time-lapse so that it appears that he is still really fast on the playback.
Wyatt is an artist and is incredibly creative in building magical swords, robots and imaginary friends with cardboard. He enjoys archery, lightsaber battles and fighting zombies. He dreams of running on the beach in Ocean City, NJ again some day. “ Erin, Wyatts Mom
A short ways from my home in Longmont Colorado lies a canyon that leads up to the Allenspark, and a bit further down the road is Rocky Mountain National Park. Down low in the canyon it can be 70 degrees, have really sharp rock, and be completely dry and up further in the canyon it can be filled with snow, blowing winds, and well below freezing on the same day and time.
My wife Angie and I decided to put up the ice climbing equipment, put down the warm down clothing and pull out the warm weather stuff since the day was going to be nice down low in our canyons. The transition periods are always fun but also challenging because you are simply rusty.
The climb I choose is a good warm up for the season and the day. This type of climbing is called a squeeze chimney. A squeeze chimney is a slot that you can fit your entire body into and the techniques for climbing it are very different from your traditional thought of how to rock climbing might be. That is to say there’s a hold on the wall and you pull down on wall. A squeeze chimney is mostly just climbed with opposing friction (think of when you were a kiddo and you use to climb the door ways or the hall ways with just opposing pressure). This particular chimney is protected traditionally meaning that you place your own removable protection into cracks which would prevent you from hitting the ground in the event you were to fall (Tradionational or Trad Climbing). The gear isn’t used for upward progress but there in the event of a fall. All upward momentum is done with your hands and feet under your own power (Free Climbing).
This climb is around 100 ft tall and is unique in the sense that you are completely inside of it for about half of the climb using mostly friction from your feet and back side for upward progress. It was warm day at around 65 degrees. Inside the chimney it was a bit more damp that it normally is. Also, if a climber hasn’t climbed a chimney in a while you usually are pretty awkward, inefficient, and little more “”loud than normal haha. “” meaning imagine waking up and stubbing your toe while realizing you’re out of coffee in the morning. I led the climb while my wife belayed me. My belayer and I are attached with a rope. As I move up she feeds more rope out to me. Once I place a piece of protection I’ll clip rope into that protection so the rope is now attached to me (the climber), pieces of protection, and my wife (the belayer). I placed maybe 6 pieces of protection and set up a belay from the top to bring up my wife (belayer). She will clean the removable pieces of protection that I placed in cracks on her way up so they can be used again on future climbs. In one of the photos the large purple camping device is an example of an active piece of protection that was placed on the climb. When I made to the top after clipping into the anchors and becoming safe, I pulled out the prayer flag and let it breathe for a bit while my wife was following me up the climb.
Once she was at the top of the climb we rappelled off the top, pulled our ropes, and that put us exactly at the bottom where the climb started. The flag with split up and sent to the 5 Perthes kids above. It was an incredible opportunity to represent you all and share my passion of climbing. Your strength and courage is humbling. You are not alone in your struggle. There are others like you and an entire Perthes community that will support you.