miraclefeet

Nathan was born with clubfoot.  Like in many cases, it didn’t show up in the ultrasound.  While a shock, the biggest surprise for Nathan’s family was how effective and painless clubfoot treatment has been.

Nathan’s feet at birth (Photo courtesy of F.A.L. Design)

After beginning Ponseti treatment at four weeks old and wearing his brace for 23 hours per day for three months, just like miraclefeet patients in Central and South America, Africa and Asia, Nathan’s mother Lauren happily reports that he is now “running, jumping, climbing and bouncing around like a normal two year old!”

Nathan wearing his brace

With such a successful treatment experience and joyous results, Nathan’s parents were looking for a way to give back.  After giving away Nathan’s first ‘boots and bar’ to a family in Michigan through the Clubfoot Shoe Exchange, Nathan’s family discovered miraclefeet.

And so it was that Nathan did big things on his 2^nd birthday.  In lieu of gifts, Nathan asked (through mom and dad) his friends and family to donate money to miraclefeet.  We were extremely thankful for the support and donations, 100% of which went directly to clubfoot treatment for children around the world.

Nathan with his family

Nathan and his family plan to continue this special tradition for his birthday every year.

“We are happy to help another child walk,” says Lauren.  “It is such an easy and painless treatment process that it saddens us for anyone to have to suffer from not being treated.”

Thanks Nathan!

Nathan today!

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We’d love to hear your donation stories!  Share them with us at leslie.loyd@miraclefeet.org.

 Or donate today! https://npo.networkforgood.org/Donate/Donate.aspx?npoSubscriptionId=1001406

“I feel good here because the doctor is very patient with my son.  That’s so comforting for me as a mother, to see that they treat my child with affection and love.”  -Bruce’s mom

Support from parents is so important to treating clubfoot.  While our partnering doctors and nurses thoroughly and efficiently treat patients, the real work happens at home.

Kids must return for new casts each week.

Once casting is completed, for three months they need to wear their braces 23 hours per day.  Then braces are worn only during naps and at night until they age of four or five. 

These children are often very young, maybe even only a few months.  So much of the responsibility falls on mom and dad to make sure their kids are completing treatment and wearing their braces.

And Bruce, a 7 month old patient in treatment at a miraclefeet partner clinic in Leon, Nicaragua, is very lucky to have parents who exemplify this commitment.  Since discovering miraclefeet’s clinic, Bruce and his parents have not missed one appointment.  Bruce’s mother and father come to the clinic with him every Wednesday and stay at his side while he gets casted, sharing the love that only a parent can give.

And Bruce’s doctor is committed too.  Dr. Balladares in Nicaragua even came in to the clinic on his week of vacation to change casts for his Ponseti patients.  Like Bruce’s parents, Dr. Balladares goes above and beyond to ensure treatment is successful.  “I feel good here because the doctor is very patient with my son.  That’s so comforting for me as a mother, to see that they treat my child with affection and love,” said Bruce’s mom. 

With the devotion of his parents and doctor, Bruce will be walking, running and playing someday very soon.  

miraclefeet co-founder Bridget with the managing director of CURE International India Trust 

We often share stories and updates about the incredible children, parents, nurses and doctors we have met across the world.  And we’ve even introduced you to several members of our office.  But who is at work behind-the-scenes, actively setting a meaningful course for the future of clubfoot treatment?

Meet the men and women behind miraclefeet’s Board of Directors.

THE BEGINNING

Twelve years ago, Roger Berman and Bridget Ryan Berman were worried when their son was born with clubfoot.  Like many in the United States and around the world, they weren’t familiar with the Ponseti Method, at the time not widely known or practiced. 

Fortunately, the Bermans quickly learned of the non-surgical Ponseti Method, pioneered by Dr. Ignacio Ponseti of the University of Iowa.  With the careful attention of his doctor Joshua Hyman, newly trained in the Ponseti Method, the Berman’s infant son was successfully treated for clubfoot.  Today, he walks, runs, plays multiple sports and is a healthy, active twelve-year old boy.

Roger and Bridget felt lucky that their child had access to safe, affordable and very effective treatment, and they asked themselves—why shouldn’t every child have access to the Ponseti Method?  And their doctor Dr. Hyman wondered the same thing. 

So together Roger, a veteran of the textile and manufacturing industries and current supply chain consultant for U.S. and Chinese retail companies; Bridget, CEO of Victoria’s Secret Direct; Josh Hyman, a pediatric orthopedic surgeon at Columbia Presbyterian Hospital, and Dr. Jose Morcuende, orthopedic surgeon and leading clubfoot expert from the University of Iowa, created miraclefeet. They were joined by Rodger Raderman, whose daughter was also successfully treated with the Ponseti Method.  Rodger remains an advisor to the organization. 

miraclefeet Co-founder Richard visiting the Wadia clinic in India

TODAY 

As miraclefeet has grown, so has the Board of Directors. 

Chesca Colloredo-Mansfeld, who learned of the Ponseti Method while working at the Univeristy of Iowa, home of Dr. Ponseti, had also become interested in the issue of increasing access to treatment in developing countries.  She connected with the group just as the miraclefeet plan was hatched and helped develop the implementation strategy.  Chesca joined the Board when she became the miraclefeet Executive Director in 2011.  Jennifer Tye, who lives in San Francisco and serves as the Associate Director of Genentech

His mother traveled five hours by foot and crowded bus, skipping meals and fighting nausea, all to get her son treatment.

Wilder, now three years old, was born with bilateral clubfoot.  As an infant, he was casted to correct clubfoot in his hometown.  But there were no results, as is often the case when children are improperly casted.  Wilder’s mother was hesitant to try treatment again.

But her friend convinced her to give treatment one more chance.  With her friend’s encouragement, Wilder’s mother agreed to travel, for the first time in her life, to Nicaragua’s capital, to consult with a doctor professionally trained in the Ponseti Method. 

Upon seeing the improvement in Wilder’s feet, his mother was determined to complete treatment, meaning weekly visits to Managua.  It also meant severe nausea for Wilder’s mother, who struggled with the long, cramped bus rides from San Lorenzo-Boaca to Managua.

And it meant sacrificing for her son’s well-being.  On one occasion when Dr. Sequeira, a partnering practitioner with miraclefeet, finished casting Wilder, his mother suddenly fainted.  Only then did she admit that she had not eaten anything that week, so that she could afford transportation for her son to visit the clubfoot clinic.

These are the sacrifices the devoted, caring parents make—and this is how important clubfoot treatment is.  And for Wilder’s mother, it is all worth it watch her son joyfully walk towards her on beautifully corrected feet. 

You feel an itch in your throat or a pain in an ankle.  You trek to the emergency room or make an appointment at the doctor’s office, perhaps sitting for an extended time in a waiting room filled with magazines and fish tanks.  Such is the medical treatment process for many in the United States.

But what is this same process like for people in Liberia or Mexico or even Peru?  Sadly, too often the frustrations we face are minor obstacles compared to the long and frustrating process of receiving health care in many parts of the world.

Zoraida’s experience as a sixteen-year old Peruvian suffering from severe clubfoot is just one example of how difficult it is to navigate the public health system.  miraclefeet first met Zoraida through a caring group of donors—Triangle United Soccer Association’s U-14 women’s team.  The team traveled to Peru to work alongside and empower young girls, one of whom was Zoraida.  Inspired to help her get treatment, miraclefeet has taken a special interest in Zoraida’s case.*

And since miraclefeet does not operate clinics in Peru, it hasn’t been easy.  Previously unable to afford medical care, when Zoraida’s parents received funds from the Triangle United soccer team, they were initially concerned that treatment wasn’t Zoraida’s best option.  Clubfoot treatment inappropriately applied can hurt rather than help—one reason trainings and clinic support are so important.  But miraclefeet arranged for Zoraida to meet with Peru’s premiere surgeon, and her parents understood this was their daughter’s greatest hope to ever walk.  Zoraida’s school principal even flew to Lima with Zoraida and her mother.

Zoraida suffers from severe clubfoot.

But the obstacles would not abate.  First she was told she needed a blood test.  The next day a TB test.  Then an x-ray.  All of which she must leave her hostel at 3am in order to get a spot in line.

What Zoraida’s family thought would take three days, to arrive, go into surgery, and be discharged, turned into more than a one month stay in Peru’s capital, far from Zoraida’s home.  Families who travel for health care often struggle to find extended accommodations, regularly living in cramped rooms with inadequate resources, and Zoraida’s experiences were no exception.  For a family who had never been to the city and whose livelihood requires attention at home, the experience was overwhelming.  Had it not been for Zoraida’s principal and her help, the family would have likely given up.

Zoraida’s experiences are troubling.  Even with concentrated attention from an educator, a non-profit and a nationally renowned surgeon, and in a country with a public health system like Peru, Zoraida was denied quick treatment.  Imagine her chances without this help.  In countries without established clubfoot clinics, this imaginary scenario is too often reality.

That is why we feel our work is so important.  miraclefeet is committed to making treatment readily available, with streamlined procedures and reliable schedules.  By partnering with public hospitals and local doctors, miraclefeet is bringing affordable clinics to countries around the world.  Without these clinics in Liberia…India…Mexico…Nicaragua, patients are left to fight for treatment in a crowded system.  We are devoted to ensuring that no one gets lost in this system and every child has access to clubfoot treatment.  

“It’s difficult to convey the emotion one feels when you see a child who has suffered from clubfoot walk normally. To see the look of hope and reassurance on mom’s, dad’s, aunty’s, uncle’s or even grandmother’s face when they start to see results is something you get addicted to and to be a part of making that happen is just incredible. I foresee miraclefeet and STEPS making magic happen!”

            -Gaby, STEPS Coordinator

One of the ways miraclefeet effectively and sustainably provides clubfoot treatment around the world is by collaborating with incredible in-country partners.  While our supporters constantly see the tremendous effects of these partners’ work through our photos and stories, they often don’t know about the people and organization’s behind the incredible transformations happening in clubfoot patients from Brazil to Botswana.

STEPS South Africa

So we want to introduce you to STEPS Southern Africa, miraclefeet’s partner in South Africa and Botswana.  STEPS was founded in 2005 by Karen Moss, a mother whose child was born with clubfoot.  After Karen’s child was successfully treated with the Ponseti Method, she wanted create STEPS to facilitate formal introduction and training of the Ponseti Method.

Partnership 

And by partnering with miraclefeet, STEPS has been able to work steadily toward that goal.  “The support we get from the partnership has helped us to build the infrastructure we need to support clinics,” says Karen.  “We have already directly affected patients’ lives at clinics by supplying braces where before the brace supply was erratic.”

Partnering with miraclefeet also gives STEPS the freedom to focus on what really matters—the children.  “It is amazing to have the level of support we have from miraclefeet.  A lot of NGO’s are so heavily reliant on fundraising and when that is the focus, it can often take away from what is really important, getting the word, and in our case treatment and support, out there,” says Gaby, STEP’s Coordinator.

Since 2005, Karen and STEPS have come along way.  Here is a brief timeline of how together, miraclefeet and STEPS have helped make Ponseti the gold-standard of treatment for clubfoot in South Africa.

2003

Karen’s son Alex is born.

2006

• STEP SA hosts its first training to introduce the Ponseti Method to the South African Orthopedics community.

2007

• After the first training was a huge success, STEPS hosts its second training to gain consensus from doctors that the Ponset Method is the proper treatment for clubfoot.

Since these trainings, the Ponseti Method has been integrated into the medical school curriculum across South Africa.

2009

• Karen first learned about miraclefeet as it was first forming.

2011

• Karen and miraclefeet Executive Director Chesca began discussing a partnership between STEPS and miraclefeet.

2012

• miraclefeet and STEPS SA partnership was finalized!

STEPS SA held a training that included practitioners from neighboring Mozambique, Botswana, and Namibia.  In these three southern African countries, the Ponseti Method has yet to be widely taught or accepted.

What does the future hold for miraclefeet and STEPS? 

By the end of 2013, miraclefeet and STEPS SA plan to support Ponseti treatment in over 8 public hospitals.  “We are helping to expand treatment in outlying regions of South Africa by partnering with clinics that serve the poorest communities, and we are launching the Ponseti Method in Botswana and Namibia this year, and also plan to work with Tanzanian and Swaziland clinics,” says Karen.  The program in Botswana will initially start at Princess Marina Hospital, the largest public hospital in the capital city Gaberone.

With miraclefeet’s support, Karen has long term goals for STEPS too.  “In 5 years, we would like to be a regional (sub-Saharan) powerhouse, educating, informing and supporting clinics, doctors and families so that clubfoot patients are receiving the best possible care.”

The day every child has treatment

And ultimately, STEPS and miraclefeet have the same ultimate wish.  “In 10 years, we hope to have completely eradicated neglected clubfoot or poor treatment of clubfoot in the entire region so that every child born with clubfoot is assured of a life without disability,” says Karen.

Learn more about STEPS and miraclefeet’s work in South Africa and Botswana:

South Africa:  http://www.miraclefeet.org/projects/SouthAfrica.php

Botswana:  http://www.miraclefeet.org/projects/Botswana.php

Back in July of 2012, miraclefeet and Crocs partnered to ensure children recovering from clubfoot treatment in Nicaragua had proper footwear. 

Now, Crocs is at it again, and this time in Liberia!

Pictured below are some familiar faces (including Youkoi) in their brand new Crocs.  

Crocs Cares’ generous donation of their trademark rubber shoes to children in miraclefeet’s clinics is so very important, for a number of reasons.

Many patients do not have adequate footwear, imperative to ensuring continued health.  Walking to school or work is a continued difficulty, all the more discouraging now that the physical act of walking is possible thanks to completed Ponseti treatment.

Often, once the feet seem completely corrected, patients will neglect to come back to the clinic.  But in reality it is so important that children continue wearing a brace for 3-4 years and come in for regular check-ups.

But with Crocs’ help, patients receive free shoes AND parents have an added incentive to bring their children back to the clinic.

A huge thank you to Crocs and the FACORC clinic for all of the amazing work they are doing.

Six months ago, miraclefeet received an incredible grant from Ronald McDonald House Charities. We planned to use this $138,000 to establish clubfoot clinics in Ecuador, providing free Ponseti treatment to the nearly 3,000 children living with talipes in the country.

And now those plans are becoming reality.

Chesca and Lauren traveled to Ecuador this month to establish relationships with hospitals, nonprofits and non-governmental organizations in Quito, Ecuador’s capital, and Guayaquil, Ecuador’s most populous city.With 300 new children born with clubfoot every year in Ecuador, it’s imperative to provide efficient and affordable treatment in-country.

A patient sleeps as his casts are finished by PIA-Ecuador Member Dr. Geovanny OIeas.

miraclefeet will launch pilot programs in the main pediatric hospitals of Quito and Guayaquil, building on the miraclefeet vision to partner with local orthopedic surgeons and establish clinics within the existing public health system.The effectiveness and sustainability of these pilot programs will be ensured in a number of key ways:

1.    Beyond the physical components essential to a new clubfoot clinic—braces, plaster, clinic support—a pilot program is all about education and outreach.miraclefeet will educate pediatricians, OBGYNs and midwives about the low-cost and surgery-free Ponseti Method; teach parents how to ensure their children’s treatment is successful; and support Ponseti doctors beyond Quito and Guayaquil.

To ensure the success of programs in Ecudaor, miraclefeet will work alongside local    partners, including:

• Fundacion Vida Saludable (a maternal and child health NGO in Ecuador)
• Ponseti International Association – Ecuador Chapter
• Fundacion Hermano Miguel
• Junta de Beneficiencia de Guayaquil

2.    To ensure the sustainability of the program, braces will be made IN Ecuador at prosthetic and orthotics workshops within Fundacion Hermano Miguel, a not-for-profit rehab center in Quito, and Hospital de Ninos Roberto Gilbert, the Junta de Beneficienca de Guayaquil supported pediatric hospital.

3.    miraclefeet will organize hospital-specific trainings. Leading Latin American experts from Ponseti International Association and physicians from Project Perfect World will examine and treat complex issues at the hospitals, like relapses, older patients and clubfoot associated with other syndromes or neurological disorders, including arthrogryposes, spina bifida, Edward’s Syndrome (Trisomy 18) and cerebral palsy.

4.    Along with the University of Iowa, miraclefeet developed a National Ecuadorian Ponseti Database as part of the International Clubfoot Registry.

miraclefeet Executive Director Chesca Colloredo-Mansfeld helps a father soak off his child’s casts at Hospital Baca Ortiz, Ecuador’s principle pediatric hospital.

We are just beginning but our partners in Ecuador and everyone at miraclefeet are excited to take this first step of many.  

Meet Leslie, miraclefeet’s Office Manager and website extraordinaire.  When Leslie’s not corresponding with donors and keeping track of our patient database, she’s playing kickball and using her pilot skills to fly around North Carolina. 

Leslie writing LOTS of letters to our amazing donors.

How did you get started with miraclefeet?

When I first moved to North Carolina I was looking to get involved with organizations that I felt were doing amazing things.  I found miraclefeet’s website and was so impressed by the huge impact they had had in such a short time.  I offered to volunteer and was asked to come in for an interview.  The rest is history.

What do you love about your job?

I absolutely adore hearing the stories and seeing the pictures of children from all over the world who have lived with clubfoot and are facing a life that is vastly different because of the Ponseti method.  I especially love hearing stories from donors about how they feel so connected to our patients because of their experiences with clubfoot.  It makes the world feel so much smaller and the people in it so much more connected.

What are some of your favorite hobbies outside of work?

I tend to find so many hobbies it’s hard to know where to start!  One of my favorites is flying- I’m a pilot.  I love playing the guitar, singing, playing kickball, checking out little book stores and exploring North Carolina.  I also still really enjoy volunteering locally and loving on the people in my community.

What is your favorite movie? TV show? Band?

I love The Count of Monte Cristo (even though its nothing like the book), Arrested Development and the local band Delta Rae.

Read any good books lately?

Shantaram by Gregory David Roberts- seriously amazing!

Favorite birthday party as a child?

For my 13^th birthday, my five best friends and I went to a Smashmouth concert (yep! that’s the band that sings about “Her finger and her thumb in the shape of an L on her forehead.”) We snuck backstage and peeked into the green room before we got too nervous and ran away.  We spent the whole night talking about how brave and adventurous we are and then got our ears pierced.  Hard. Core.

If you could only eat one thing for the rest of your life, what would it be?

Chocolate.  Or Mexican….maybe Mexican Chocolate.

What are your biggest goals in life?

My goals in life are to give back as much as possible and to have as much fun as possible doing that.  As long as I’m doing that, I’m happy.

As we look forward to 2013 and all that it will bring, we want to reflect on the triumphs, growth, support and new friends that 2012 saw.  So we asked everyone at miraclefeet to think of their favorite moment from the year, and we received all kinds of answers.  But they all had one common thread:  none of miraclefeet’s work would be possible without the amazing support of our donors, followers and local partners.

So without further ado, here it is!  Our “Top miraclefeet Moments of 2012.”

Ask the Staff: What Was Your Favorite Moment?

Chesca (Executive Director): “Launching programs in Africa - both Liberia and Zimbabwe and the partnership in Southern Africa with STEPS.  These new programs demonstrate we can scale and show what an impact we can have by partnering with local partners.”

miraclefeet’s local partners in Africa: 

• FACORC, Liberia
• Zimbabwe Sustainable Clubfoot Project, Zimbabwe
• STEPS, South Africa

Leslie (Office Manager): “The amazing support from donors.  I love the notes that we get when people send in checks expressing their appreciation for the work we are doing.  We even started a bulletin board with the heart-felt notes we get from our donors.”

Artwork from Brody, who donated his braces to miraclefeet.

Anne (Director of Finance):  “Having our first audit!  With our audited financials, we are able to apply for additional grants and give confidence to our donors.  With our audited financials, we earned the GuideStar seal for being committed to transparency!”  

Learn more about miraclefeet’s financials and commitment to transparency: http://www.guidestar.org/organizations/27-3764203/miraclefeet.aspx

Lauren (Program Manager):  “The twins in Liberia!  And for so many reasons – because Ponseti WORKS, even in older children; because the twins are now able to go to school and it shows how clubfoot treatment transforms lives; both parents can work full-time now – it’s affected the whole family.  When it comes down to it, it’s because these children got the treatment they deserve.”

Maima and Youkoi are all smiles after Ponseti treatment.

Mary Charles (Social Media Intern):  “The opportunity to share miraclefeet’s story with more people as our social media followers increased by the hundreds—stories of the special ways our donors are giving, the importance of initiatives like International Day of the Girl,  and miraclefeet’s Ronald McDonald House Charities grant.

 Some of Our Other Favorite Moments: 

• Having Anne, Leslie, Mary Charles, Rebeca (Nicaragua) and Olga (Mexico) join our team, enabling us to more effectively run our programs and interact with our donors.

Rebeca with a patient in Nicaragua

• The day we reached 500 children… and the day we reached 1000 – both of which happened in 2012.

What a year 2012 was.  We can’t wait to continue providing access to clubfoot treatment to more children around the world in 2013.