SINCE arriving in England this summer, financial brokers Misha Walker and her husband, Mike, have met 11 families with the rare condition arthrogryposis.

Arthrogyposis causes a person’s joints to contract and become fixed in a bent position.

All of the families who had young children told the couple they had been encouraged to terminate their pregnancy because of the diagnosis, despite the fact it has no effect on a person’s learning capabilities.

It made two of the families so uncomfortable they changed doctors.

Knowing this breaks 34-year-old Misha’s heart.

She was born with arthrogryposis multiplex congenita (AMC) in the small town of Arequipa in southern Peru.

The condition means she is unable to lift her left arm, which is shorter than average, so she must stretch regularly to increase the range of motion.

But the crucial message is, it has not stopped her leading a happy and fulfilled life which is what she wants to share with the parents of children with AMC.

Speaking from Mike’s family home in Marks Tey, she said: “I don’t know if at some point my family felt like I was a burden to them but I always say, our parents are the heroes of our stories.

“If you advocate for your child, there’s always something which can be done.

“That’s why I’m so active on social media. If I’m making toast, I’ll post it,” she laughed.

“For you, making toast is a simple thing but the fact I can bend my elbow and eat the toast, lets a parent whose child doesn’t have a bendy elbow know it’s possible.

“That can be life-changing.”

Earlier this year the organisation AMCSI, headquartered in the US, opened a position for Misha as their international ambassador for at least a two-year term.

She began working with the organisation six years ago and also blogs about living with AMC at MishaDreamWalker.com.

What she aspires for is a better relationship between the medical community and the families who bear the brunt of a lack of support but also to raise GP awareness.

She said: “In September we’re having a medical symposium in Philadelphia with nearly 70 doctors.

“It just takes for one door to open to get that interest from the medical profession.”

Gazette:

Mike, 33, added: “Through AMSCI we’ve been lucky enough to have met the current global AMC specialist and Dr Judith Hall, who wrote the book on AMC.

“They both say when you have a baby born with AMC, that’s the worst they’re going to be. It’s all uphill from there.”

Their reason for saying that is AMC is not a progressive condition, although there are more than 300 types which can cause multiple curved joints in areas of the body at birth.

Experts say with vigorous physiotherapy or corrective surgery, the potential for patients to lead a healthy, rewarding life is excellent.

Therefore changing the perception of a life with AMC is the backbone of Misha’s advocacy so adults develop a more positive self image.

The same importance is placed on introducing families to a network of others.

This year and last, Misha and Mike had extended stays in America, where on one trip they met 78 families across 22 states.

Back in Colchester this summer, they met seven including in Wivenhoe.

She said: “I met the first person with AMC at 28. Another man we met, the first time he’d met someone with it was age 55. He thought he was alone.

“This is why community is so important because online especially, it’s huge. You will find someone who has gone through similar scenarios to you. But if the media or medical community isn’t interested, it makes connecting them more difficult.”

In the UK more than 260 babies are born with AMC each year leading to disability and in some cases, death.

The cause of the condition is not clear but reduced fetal movement affecting early joint formation, is one known factor.

Mike knows of specialists clinics at Great Ormond Street Hospital and Birmingham Children’s Hospital, but says knowledge needs be more widespread.

Other issues surround the cost of physiotherapy. He said: “The NHS won’t give a person physio two to three times a week every week so parents are expected to pick up the slack.”

Doctors told Misha’s mum she would be paralysed from the neck down.

She was later diagnosed by a doctor in New York at one-month-old but by then, intuitively her mum had begun stretching her limbs.

She said: “We went back to Peru where I went through surgery, physiotherapy and treatment in Cuba. I lived there for one-and-a-half-years at age ten, and began walking when I was three.

“Now, I live an independent life. I need help sometimes, we all do, and use a wheelchair every now and again for long distances because I get tired, but I still travel around.”

Right now her and Mike, who met in Vermont more than a decade ago working the ski season, are back in the US where their campaigning continues.

Interviews with a lot of the families they have met will feature on Misha’s YouTube channel so the “horrible medical drawings from the 1950s,” as Mike describes, are replaced with real-life, empowering stories.

Plus you can always watch Misha’s ‘Having fun my way’ and ‘Dancing my way’ videos - proof that life does not stop with arthrogryposis.

Visit amcsupport.org for more information.