Bash Gettin' Bendy With It!
Recovery in Motion
Bash's Story of Bendiness
Part One
Part Two
Give Now to Bash's Recovery in Motion
$20 $40 $100 $250 $500
2012
2013
2014
August 2014 Update
After three tendon release surgeries and over 100 hours of Cranio Sacral Therapy, Bash is winning his battle for bendiness. Born with Arthrogryposis, Bash is now walking, playing and adaptively feeding himself at 3, almost 4 years old. Bash has accomplished so much in his three and a half years of stiffness that his condition has caused. Daily we are working to expand his range of motion to get more joint flexion in his hands, arms, feet and legs. At birth we where told by one of his doctors he would never get better, but every day, Bash is proving that wrong, believing that miracles do happen and one can recover from Arthrogryposis Multiplex Congenita (AMC). AMC is a rare congenital disorder that is characterized by multiple joint contractures and can include muscle weakness and fibrosis. 30% of children born with AMC don’t make it to 10 years old because it effects major organs and the spine. Of those that do survive, some never walk, and those that do are usually delayed. Bash’s legs are less effected than his arms. He didn’t crawl, he scooted all around. Once he was able to get on his feet we got him a walking device called a gait-trainer. This helped him build the muscles needed for walking independently. Bash was about two and half years old when he took his first steps unassisted. Today he is thriving and everyday overcomes challenges as he forges his own way in life.
The public school system and some more traditional therapists have told us to put him in a wheel chair, that “It will make it easier” but we have always refused. We believed in his ability to walk and did not want to limit him to a chair, just because “it’s easier.” Now Bash is walking independently, up to a half-mile at a time and grows stronger everyday. We work extremely hard for every detail of his functionality and freedom. And we all get to celebrate when he reaches growth and childhood mile markers.
After his successful arm surgeries, now Bash needs a device called a mobile arm support so he can get more range of motion in his shoulders and elbows. Usually this is a cumbersome technology, made of metal and attached to a wheel chair. But because Bash is not in a wheelchair, he needs something light weight, that can go with him everywhere. We were lucky enough to hear about a new technology, made possible by the advent of 3D printing. Its called a Wilmington Robotic Exoskeleton (WREX) device and it is a plastic exoskeleton “printed” out of lightweight materials that are then attached to a vest. Dubbed “Magic Arms” by another little girl with #AMC, the device is so light that he can wear it easily. It supports his body, and will assist him in lifting his arms, taking the load of his heavy arms off of his under-developed muscles. With his new Magic Arms, Bash will be able to explore an entire new range of motion in front of his face and torso, feed himself more easily, and explore and interact with his world in exciting new ways.
When Bash saw Emma’s story on YouTube, and witnessed her using the Magic Arms, he turned to us and asked when he would get his Magic Arms. We didn’t know how it was going to happen, but we knew that Bash deserved to have this device for when he starts school in August.
We began researching and found the doctor, Tariq Rahman, Ph.D from Nemours/Alfred I. duPont Hospital for Children in Wilmington, Delaware, who helped create and design Emma’s device. We called Dr. Rahman and also had Becky Marshall, our Rehab Case Manager from Children’s Healthcare of Atlanta reach out. We were so hopeful and thought because the need is there, we would be able to get the “Magic Arms” covered by Medicaid. But after getting measured and fitted and all our hopes up, we were told that it would not be covered because there are no clinical trials to date proving the effectiveness of the Magic Arms.
Most mobile arm supports attach to a wheel chair and get coded in a way that will get it covered by Medicaid, but this technology is so new there is no precedent for it.
It is our hope that Bash can be a part of a clinical trial that will be submitted to Federal Children’s Services. Once reviewed and approved at a national level we could pave the way for other family’s to receive Medicaid funding for the Magic Arms in the future.
So now this is so much bigger that just Bash, this is a new technology that can improve the life of thousands of children with AMC. Through my social media, Facebook and Instagram we have had mothers contact us, that want to get the device for their children too. It’s truly amazing the hope and excitement we are raising. But there is no time to wait. Bash needs his “Magic Arms”. We only have 90 days to raise about $10,000 to get the order filled and have it manufactured in time for school. This is the great thing about living in the future, we can take an idea and make it reality!
We believe the WREX will support his body to take away the weight of gravity. This will enable Bash to lift is arms, bend is elbows, better write and feed himself. The WREX unit or as Bash calls it, his “Magic Arms” will help him interact and explore the world. Because his deltoids and biceps are underdeveloped he needs the support, so the muscles can grow and strengthen through new pathways of use.
Photo by Kieko Guest
Give Now to Bash's Recovery in Motion
$20 $40 $100 $250 $500
October 11, 2010, two baby boys were born at Atlanta Medical Center.
Three hours apart, to same midwife and pediatrician. Both mothers were healthy and had normal pregnancies with no indication of abnormality. But their two babies were both born with a rare condition called Arthrogryposis, a congenital disorder characterized by multiple joint contractures, muscle weakness, and fibrosis. There are 400 possible types of this disorder and any part of the body can be affected. One baby's limbs were affected while the other was born with a severe contracture of the spine, curving his body into a "C" shape, leaving him unable to eat or breathe. This second baby was rushed to the ICU and hooked up to a breathing machine and feeding tube through his nose. Shortly thereafter, he was medevaced to Scottish Rite Hospital where he stayed for the first several weeks of his life.
Meanwhile, the first baby was stable. He was able to latch and nurse, and his breathing was normal, yet his arms and hands looked paralyzed, he had no discernible elbows, and his toes were at his ears due to severe stiffness in his hips. After three days, he was discharged to go home. The midwife, Margaret Strickhouse, has delivered over 5,000 babies in her career and had never seen Arthrogryposis before that October morning when she delivered two affected babies in one day. This a very rare and unlikely story, as only 1 out of every 3,000 babies in America are born with this condition, 30% of which don't survive.
Tragically, of the two babies born that day, one lived, and one did not.
The baby who's spine was so severely affected simply could not sustain life, while the baby who's limbs were affected was blessed with a healthy heart, lungs, and organs. Bash is the baby that survived. This is his story.
When Bash wad born, he was extremely stiff in his knees, wrists, elbows and shoulders. It was immediately apparent that he had had extremely limited movement during gestation, with limp, lifeless arms and hands, and very thin, stiff legs. In the most common type of arthrogryposis, hands, wrists, elbows, shoulders, hips, feet and knees are affected. In the most severe types, nearly every joint is involved, including the jaw and back. Frequently, the contractures are accompanied by muscle weakness, which further limits movement. Bash was born with very weak and underdeveloped muscles in his shoulders and arms, particularly his biceps. Because he was born without the ability to bend his elbows, his biceps never had the opportunity to engage, fire, and grow as a result of flexion at the elbow.
All of Bash's therapists and doctors, are very encouraged, and note that he has a very mild case. Some say its the most mild they have ever seen. One can recover from this condition and become symptom free. This is the intention we hold clear.
When Bash was 10 days old we took him to an Osteopath, Dr Armond in Suwannee, GA, and after one treatment, he “grew” a neck and his breathing went from high chest breaths to healthy low belly breathing. Encouraged, we continued the treatments and he started to grow what looked like elbows. This was the beginning of Bash's healing journey. Bash has received world class holistic treatment in our dedication to enabling his to bend his elbows and feed himself. In addition to standard medical therapies such as physical and occupational therapy, Bash has received: Osteopathic care, Chiropractic, Massage, Acupuntcure, Cranio Sacral Therapy, Reiki, Quantum Clearing, and AlphaSonic Soundwave Therapy.
As a classic "million dollar baby," he qualifies for state programs such as Babies Can't Wait, which sends therapists to the house every week to supplement the therapies that insurance covers
Everyday Bash gets better and better. He gets around the house by scooting, making his own way, its amazing to see. He has now met major mile markers in his development. He has learned to stand, get his balance, and take a few steps. He has a wonderful gate trainer that he gets around in very well, and loves to go fast in it. He has built a great sense of confidence now that he can go and explore his world as he pleases.
On April 19, 2013 Bash had his first surgery.
He had both of his arm tendons extended. This will give him the ability to move passively at first, then over time gain the strength, and hopefully build the bicep muscles to get active flexion so he can feed himself, touch his face, and become independent. In surgery they were able to get full 120 degree range of motion which was the ideal outcome of the surgery. Although there was a complication, which caused his right are to fracture, so now he also has recover form a broken arm. The doctor said this happens often with AMC kids because the bones are unused and weak.
During this recovery time there are major limitations on the therapy we can do with the casts on. His doctors have prescribed Occupational Therapy when he gets his casts off in 2 - 4 weeks. But we can do, in the mean time, Cranio Sacral Therapy, even with the casts on. This is a very specialized therapy and it is expensive, costing $130 per hour. It's crucial that we raise the funds for this continued therapy, as it is the only way to keep the progress he has made while healing from the intense surgery.
We have a long way to go before he is totally functional and independent, but with your continued support we can do it together! With Cranio Sacral Therapy, PT and OT, we know Bash will overcome all of the challenges life has offered him.
You can make a difference,
give now to help support
Bash's road to recovery !
