Spring 2018 Newsletter
SPRING Message from Dr. Salyer
As the weather warms and the days grow longer, I'm reminded that this is the season for renewal. And at the WorldCF, renewal is our vital business. We help transform the heads and faces of children around the world who are born with the most complex craniofacial challenges, and in so doing, we renew their lives. Instead of living in darkened rooms forever-or worse-they confidently go out into the world and become productive citizens. And all of us who devote our time, talents, and financial resources to this very important work know how wonderful it feels to offer children these kinds of support. Helping kids does something special for each of us as well, and I invite you to feel both proactive and proud when you give generously to the WorldCF.
In this Spring 2018 issue of Transforming Lives, you will read about precious young twin girls from Pakistan with whom the foundation recently came in contact, and whom we are trying to help. Safa and Marwa, just over a year old, are conjoined at the top of their skulls and they face almost impossible odds for living full lives unless they can be separated. Our affiliated teams of surgeons and medical professionals are currently assessing whether and how they can undergo surgery. And we hope that by the time we communicate with you again this summer we will be able to announce that, yes, they will be safely and successfully separated in the coming months.
In this issue we update you, too, on our beloved Freshta, the Afghani orphan you've read about for more than a year now. The WorldCF recently created a moving new video about Freshta and the wonderful experiences that are unfolding for her, and we are proud to continue supporting her in every way we can.
Don't miss reading about the vitally important craniofacial surgeries that have recently been performed aboard the hospital ship Africa Mercy, on the eastern coast of sub-Saharan Africa by a WorldCF surgical team. In a part of the world where craniofacial abnormalities are far too common, and where excellent medical and surgical care are often difficult to find, we are excited that WorldCF medical director Dr. David Chong, and pediatric neurosurgeon Dr. Shailendra Magdum performed the first ever intracranial surgeries aboard the hospital ship operated by the American charity Mercy Ships. We are very optimistic that there will be more surgeries and we can continue to partner with this remarkable floating hospital and the people who sustain it far into the future.
And don't miss our announcement that for the third autumn in a row, renowned country and gospel performer Jimmy Fortune will headline a WorldCF benefit concert, produced by former WorldCF patient and benefactor Jack Accola. The 2018 concert will take place for the first time at the Ho-Chunk Gaming Wisconsin Dells casino in Baraboo, Wisconsin, and look elsewhere in this newsletter for the exciting details.
I want to take this opportunity, too, to ask you to remember all the children around the world who depend on you to receive the gift of a normal face so they can fulfill the many promises of their young lives. Please remember that for every child we introduce to you, dozens more receive life-changing care from WorldCF-affiliated craniofacial surgeons, clinics, hospitals, and medical personnel here in the U.S. and around the globe.
Thank you so much in advance for giving as much as you possibly can to make these children's dreams become realities! Thank you, and may God bless you.
Freshta at her new home following her recent very successful surgery
Freshta Is Making Wonderful Progress in North Carolina
Please take just a moment to watch a moving new video produced, shot, and edited by WorldCF filmmaker Marcus Lopez about the progress being made by our precious little Freshta, an orphan from Afghanistan who now lives in North Carolina. This wonderful girl has a very bright future-thanks to your incredible generosity! But she will need many more surgeries, and we desperately need your help to ensure that the new light in her life continues to shine bright!
It's our huge hope that your financial support will continue and that we can help thousands more children like Freshta grow up and lead productive lives. While organizations like Smile Train and Operation Smile provide effective care for many cleft lip and cleft palate patients, sadly, more complex cases are often excluded because of the lack of surgeon skill, proper funding sources, and the ability to provide post-surgical and follow-up care.
From the outset of her great adventure, Freshta has been assisted by nuns, physicians and surgeons, visa and adoption attorneys, international child-welfare advocates, and by the North Carolina family who has taken her into their home and into their hearts. Her future is very bright, but her additional surgeries will be complex and expensive, and please help us help this precious little girl live a truly normal life!
Please watch this beautiful video at http://worldcf.org/about-us.html#video or at the World Craniofacial Foundation's Facebook page.
Conjoined Twins Safa and Marwa, who were born in Pakistan in January 2017
WorldCF Attempts to Help Pakistani Conjoined Twins
It was the kind of email our foundation often receives: "Dear Sir or Madam," it began. "I am writing to you regarding two conjoined twin baby girls located in Charsadda, Pakistan. . . . They are joined at the top of their skulls and there is no sufficient medical capability nor capacity in Pakistan to perform a surgery aiming to separate the two. . . . I was truly very moved by their story and started looking into and reading about similar stories, where families with little resources have been helped by an international organization or an institution such as yourselves. . . . I have no idea how you normally review or even consider such cases. So please forgive me for reaching out in this way. . . . Also, I should mention that I am just an ordinary Danish woman from Copenhagen, Denmark, who saw this news and couldn't help but wonder how I could maybe do something more than donating some money to help these two girls far, far away from where I live myself."
Immediately after receiving this message from Sobia Akram-who emigrated from Pakistan to Denmark with her parents many years ago and who still speaks Urdu-the foundation set in motion a several-continent effort to determine whether the twin girls Safa and Marwa can be safely and successfully separated. We are being assisted by neurosurgeon Dr. Shahib Ayub at the Northwest General Hospital and Research Centre in Peshawar, who has closely consulted with the girls' family since they were born, by Dr. Salyer and WorldCF medical director Dr. Derek Bruce, former board member Andy Christensen and the terrific folks at suburban Denver's 3D Systems, who will create a highly accurate three-dimensional model that will help us determine how distinct the two girls' brains are, and whether their brains share much of the venous system that supplies them with blood.
Meantime, Dr. Salyer and others are researching the best possible location and team for the separation surgery-should it prove possible. We are hopeful, of course, but can't let our optimism get in the way of careful and very complex surgical analysis.
Back in 2003, Dr. Salyer led a WorldCF team of more than fifty medical professionals at Medical City in Dallas in the 30-hour separation surgery of Egyptian twin boys Ahmed and Mohamed, one that ultimately was stunningly successful, making the boys international media stars in the process.
Here at the WorldCF, we love happy endings, and the boys ultimately had a second surgery to replace missing skull bone before they returned home to Cairo. They are teenagers now and we are thrilled that they are living the normal lives that once were unimaginable for them. It's wonderful to imagine that a similar future might await the Pakistani girls, and please keep them in your thoughts and prayers. We will share much more of their story in our next newsletter.
Egyptian twins Ahmed and Mohamed a few years after their successful separation and skull reconstruction surgeries
Teenagers Ahmed and Mohamed, Autumn 2017
Africa Mercy, operated by Mercy Ships on the coast of eastern Africa
WorldCF Team Treats Patients Aboard the Africa Mercy
WorldCF medical director Dr. David Chong, who practices in Melbourne, Australia, and his friend and colleague, neurosurgeon Dr. Shailendra Magdum, who works in the Oxford University Hospitals system in England, performed the some of the first intracranial surgeries attempted aboard the hospital ship Africa Mercy in November while the ship was docked in Douala, Cameroon on the eastern coast of Africa.
The two spent a remarkably successful sojourn on the ship and will be sharing the stories of their patients in the next issue of Transforming Lives.
Mercy Ships is a highly respected, Texas-based charity that has been serving patients in Africa since 1978. Many people in Africa have little or no access to healthcare. There are only 2.5 physicians per 10,000 people in Africa, compared to 25 physicians per 10,000 in the U.S. Africa Mercy brings volunteer medical teams and sterile operating rooms directly to people who would otherwise go without care. It's the world's largest civilian hospital ship providing state-of-the-art care to those in desperate need.
The incidence of complex congenital craniofacial disorders is far higher in sub-Saharan Africa than in the developed world as well, and it is an enormous region where we have served needy children for many years. Over the years, many of our African children have been operated on in the U.S.-like our dear Ugandan patient Petero-and others have received care in hospitals around the world. Many have traveled to South Africa, as well, where WorldCF teams have assisted dedicated local surgeons Dr. Frank Graewe and Dr. Alexander Zuhlke. Patients like Grace from Zambia, and Akikere and Somto from Nigeria recently received surgical care in South Africa and are at home again and thriving.
New patients Gabisile from Zimbabwe and Akinfolarin from Nigeria are currently in desperate need and will travel to South Africa soon as well. The cost of their travel, lodging, surgical care, and recovery is staggeringly high-yet this is the work to which we are committed, and which we cannot do without your very generous help.
One day, most surgeries for our African patients might take place on Africa Mercy or another Mercy Ships floating hospital, but even if that occurs, the total costs for each family in need will continue to be prohibitive without WorldCF help.
Please open your hearts and give as generously as you can-to help these wonderful African children and others like them around the globe as well!
WorldCF medical director & craniofacial surgeon Dr. David Chong
Pediatric neurosurgeon Dr. Shailendra Magdum
Zimbabwean patient Gabisile, who suffers from Cruzon's syndrome
Nigerian patient Akinfolin, who suffers from life-threatening Pierre Robin syndrome and who currently must be fed by a nasal tube