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Guest blog: Sherrie Duval and her husband, James, have eight children. Seven of their children are adopted, and four have special needs. Sasha was born with arthrogryposis, a musculoskeletal disorder that causes joints to be stiff and crooked. After the Iowa family adopted her when she was 12, they spent the next three years taking initial steps toward helping Sasha realize her dream of living independently. After numerous surgeries, Sasha came to Mary Free Bed for rehabilitation. Her goal when she arrived in May was to walk for the first time. When she graduated in July, she was walking up to 500 feet with a modified walker.
“She’s an unusually brave and determined young woman,” said Dr. A.J. Rush, a pediatric physiatrist who oversaw her care. “I am truly curious just how many people — probably dozens — told her that she’d never walk. She sure proved them wrong!”
In this guest blog, Sherri shares Sasha’s story and how Mary Free Bed’s team of pediatric rehabilitation specialists helped put her on the path to independence.
Sasha was born in Odessa, Ukraine, with a rare condition called arthrogryposis or AMC. She was left at the hospital, because there is no help for someone in her country with any sort of physical disability, especially one so severe. Our family heard about Sasha when she was 11 years old. Until then, she had lived in a baby house and then an orphanage in Ukraine. One surgery was attempted to help Sasha, but since there was no bracing or follow-up, the surgery did nothing to help.
At age 12, Sasha came to America and started treatment at Shriners Hospitals for Children in Philadelphia three months later. She barely spoke English, and a lot of Google Translate was used to help her understand what was being done. First her feet were casted to straighten them. Her feet were turned under, and 17 sets of casts were required to get them straight. The next surgery, double femoral osteotomies, helped turn her legs to the correct position to walk.
We then took a break from her legs and went to Mayo Clinic in Rochester, Minn., for hand and elbow surgery to allow her more flexion in her elbow and to move her thumb so that she can grab things with her hand. As soon as she recovered from that, we started fixators for both legs. First one, then the other. The process to get both legs straight took nine months. It was extremely hard. She was a trooper though and kept telling us she was going to walk. When the last cast came off, we headed to Mary Free Bed so she could start intensive therapy.
I did a lot of research, and I discovered that Mary Free Bed was not just a hospital with a therapy unit but an actual therapy hospital. Honestly, I did a lot of research on all of the places we have chosen for treatment, and we’ve always chosen the best for her. Mary Free Bed is the best, so that is where we went.
Mary Free Bed has helped her to not only kick-start her walking but also to help her strengthen muscles she had not used before. Everyone gave her a lot of love and care following an intense three years of surgeries and helped her to be able to walk with only a walker for the first time in her life. I would recommend Mary Free Bed to my friends, especially those who are going through the sorts of surgeries that Sasha has.
I believe that Sasha will walk totally unassisted, but I believe it will take time. She has a lifetime of sitting and doing nothing and fear to overcome. I see Sasha as being able to walk around a house and do the things she needs independently. When she arrives at the point that we believe she has become the best she can physically, we will make adaptations to our home so that she can have access to the things she needs for daily care. We will have to adjust things, because she is only 4 foot 3 inches tall and has no overhead reach. We are excited to see she’s learned to dress and feed herself without assistance.
Sasha has been homeschooled and has made a lot of progress from her years without an education, but she also starts public high school this year. It will be the first school year that we will not be spending weeks and months traveling for medical care, so we are looking forward to living life, to getting involved in more local things and not missing out on fun events and holidays at home.
Sasha is also starting to think about career choices. Right now, we see that as being things she can do from home on a computer. Mary Free Bed helped direct us to some technology that can help her to really maximize her skills and bring her education level up to her capabilities.
We are looking at a bright future for Sasha. She really wants to get married one day and to have a job, to travel and to have friends – to be able to do what everyone else is doing. She wants to be happy and to make her own choices in life. She wants what we all want. We see the past three-plus years of surgeries and therapies as giving her the tools to be able to make those dreams come true.
The Duvals were featured in Good Housekeeping magazine as part of an ongoing series of stories about adoption and foster care in America. Read it here.