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Our International Inbound Program:
Meet Daniela
Please consider donating to help this sweet little 12 year old girl Daniela.
Daniela is from Santa Marta Colombia. Our Medical Team first met Daniela while doing medical missions in Colombia. Daniela is a bright and sweet girl with a great sense of humor. Sadly, she has been living in the hospital for many years. Daniela was born with a rare disorder of her immune system leaving her susceptible to infections that any other person would easily be able to fight off. Her body has been attacked by bacteria and funguses that would not be a threat to any person with a normal immune system. The organisms that normally coexist harmlessly in our bodies have caused a relentless destruction beginning in her sinuses and spreading to all areas of her face.
In the past year it has become more aggressive and it now affects her vision and her speech as well. The medical teams have done all they can using the resources available to them in the area of Colombia where she lives but they have not been able to help her fight the devastating spread of the infection. As a result, she lives with a continually progressing destruction and deformation of her face.
Recently, through the efforts of several infectious disease specialists in the U.S., her diagnosis of Corynespora Cassiicola Disease has been established, and the N.I.H. (National Institutes of Health), in Bethesda, Maryland accepted her case.
Daniela and her dad arrived on April 15th and she is now a patient in their facility in Maryland. She is receiving antifungal therapy and doing well.
With your help, we are hoping to raise money to help support Daniela and her father while they are here for treatment. This may be a lengthy process and Daniela will need plastic surgery after treatment of the infection.
Please make your tax deductible donation today
to help support Daniela while she is here in the U.S.
100% of your donation
will go to support Daniela
No amount is too small
and we are very grateful for any help you can provide.
Thank you so much in advance.
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Notes from Speech Team
India Medical Mission, January, 2018
Submitted by Helen Buhler:
F
or over 10 years, Dr. Shari Berkowitz and I have participated in the HTCNE medical mission Speech Team to provide therapy to hundreds of children in need. In addition to speech therapy for clients, we also develop home speech and language programs for parents, information share with local speech language pathologists (SLPs), audiologists and university students.
As Program Director of the Communication Disorders program at Mercy College. I have noticed more and more graduate students each year express a greater interest in participation in international medical service. Partaking in medical missions allows them firsthand exposure to health, cultural and social conditions of the host countries while reinforcing the interdisciplinary nature of health care. The education, training, and volunteerism provided builds a vital network of partner countries to provide children with cleft lip/palate and other developmental disabilities the chance for a new life, a new future. On January 2018 trip to Ujjain/Indore we were accompanied by current graduate student, Tara Clinton and Mercy alum and Hindi speaking, Aarti Garg. Both are very appreciative of the wonderful opportunity to foster the development of compassionate and culturally competent care.
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One of the clients we saw in Indore was a 3 year 8 month old girl diagnosed with Treacher Collins syndrome, a rare craniofacial disorder that can cause hearing loss and which affects about 1/ 50,000 individuals. The specific physical
symptoms
of
Treacher
Collins
syndrome
may vary greatly from one individual to another, and may range from hardly noticeable to severe. In addition to modeling speech and language development activities, we counseled her parents in regards to her speech and hearing delay, as well as provided strategies to facilitate language development at home. The parents watch what we do first and then we train them how to practice techniques at home. If parents have recording capabilities on their phone we record our session so they can review strategies at home.
Medical Trip to India- Jan 2018 by Tara Clinton:
An essential part of our India mission was to educate the individuals who received surgery, as well as their families. During our sessions, we were able to provide these patients with strategies to help them speak in a manner more similar to their peers. Typically, speech therapy is needed for an extended time period, so our goal during the mission was to provide the strategies and tools needed to improve overall speech intelligibility. As Dr. Buhler taught us, “teach them the next steps towards their speech development” and Dr. Berkowitz said many times during our trip, we were teaching these individuals, “quick and dirty” therapy strategies that would allow them to practice at home. We had the opportunity to help many cleft palate patients reduce their hypernasal speech and compensatory articulation due to their structural abnormalities. In Indore, one girl that stood out in particular was a 16 year old with a cleft palate. Due to her abnormal speech, she tried to avoid speaking as much as possible, and often had other people speak for her. We met with her several times during our stay, which allowed us to teach her the correct articulation of certain sounds, as well as provide her with many techniques to self-monitor her hypernasal speech. Although limited in our resources, we were able to provide her, as well as many other children, with tools to take home and practice with once we left!
Medical Trip to India- Jan 2018 by Aarti Garg:
This medical trip was one of the most gratifying and humbling experience off my professional life. Despite being born and raised in India I was not prepared for the events that ensued during this trip. I was blown away by the massive size of the mission and was very fortunate to be part of such an amazing team of surgeons, anesthesiologists, nursing staff and our own speech members. As a team we all had one focus and one goal- to work with children and adults with cleft lip/palate to make not only their life better but also the lives of the family members that depended on them. India is a cornucopia of people, beliefs, habits and way of life. There is chaos but it's organized chaos. One thing was I realized is that like every parent in this world the parents in India want the best for their children.
One such teenage child with a repaired cleft lip but unrepaired cleft palate came into the speech clinic accompanied by his father. He presented with hypernasality and 40% speech intelligibility. When asked the reason behind his visit, he said,“I want you guys to fix my lip.” He then proceeded to say how important it was for him to look handsome and the only way it would happen is by having his cleft lip repaired. I explained to him how important getting the cleft palate repaired was and how that would enhance his speech. The young man immediately said, ”You don’t worry about the palate. I will work on that. But can you promise me that you will fix my lip?” I was taken aback by his insistence on getting his lip fixed rather than the palate. Having teenage children of my own, I realized, the pressure to looking good and be accepted by their peers is paramount among teenagers across the world. Dr. Buhler and I were counseling this teenager and Dr. Buhler said, “Cleft lip will get you the girl, but cleft palate will keep the girl.” He immediately broke into a smile and was able to relate to what we were saying. The light bulb finally went off and he was able to understand the importance of repairing his palate first and then focus on the lip. During the next few days, I saw him around the hospital and each time I saw, he waved his hands, looked at me with gratitude.
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Welcome Home
Team Bolivia
where 58 children
have had their lives improved and
Team Cartagena
where 62 children
had their lives improved.
Thank you to these teams who will be featured in an upcoming newsletter.
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and a donation will be made to HTCNE
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A Sad Farewell
Lynn Speer, RN started traveling with HTCNE in 2003 and since then she went on 18 medical missions with us under the leadership of Dr. Steven Roser (who introduced us to Lynn) and Dr. Shahid Aziz.
She also traveled with Smile Bangladesh Organization under the leadership of Dr. Shahid Aziz, both were HTCNE’s alumni.
Lynn was a lovely and remarkable lady – a dedicated nurse at New York Presbyterian Hospital.
Lynn was very active in the Avon Breast Cancer Walk every year and had just participated this past October.
It was two weeks later that she became ill – diagnosed with stage 4 cholangioma. Lynn fought a great battle.
Lynn was known for her great sense of humor. She was kind, respectful, generous, caring, selfless, a “mom” to all. All of these qualities we all should share.
Our deepest condolences to Lynn’s family.
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Upcoming Fall trips:
Sept 21 – 29 -
Dr. Steven Roser Facial Plastics Cleft Lip and Palate team
to Sucre, Bolivia
Sept 29 – Oct 7 –
Dr. Andrew Jacono Facial Plastics Cleft Lip and Palate team
to Santa Marta, Colombia
October 18 – 26 –
Dr. Robert Arbuckle Dental team
to Cape Verde Islands
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