Yahoo Cleft Club Member Seeks Website Revisions
One woman's efforts eliminates the *H* word from several websites
From: Gadsden
To: jorge@reinor.org
Sent: Saturday, February 02, 2002 6:12 PM
Subject: Harelip
Dear Sir:
Please could you stop using the term Harelip! It is for most of us clefted people a very negative term, associated with teasing! The correct term is cleft lip, which describes the condition much better anyway!
Thank you for reading this,
yours faithfully
Kerstin Gadsden
Reply:
I thank you for the advice and going to change the term in the web page. I didn´t meant to use this word to cause discomfort, thats why I want to apologize to you, and I will looking forward for more comunication.
Thanks very much,
yours faithfully
Jorge Reina Noriega
CMP:2418 RNE: 1986
"Ayúdame a Ayudar"
Reply:
Dear Kerstin,
Dr Jorge Reina has passed on your comment to me as webmaster for his small web site.
I would like to thank you for pointing out that harelip is an inappropriate term and should be replaced by cleft lip. I have amended this accordingly on his site at http://www.reinor.org and I'm arranging to have the old site at barrioperu withdrawn.
I have also put together a page on cleft palate and cleft lip operations done in Moyobamba in the Peruvian jungle for free for children (and youths - some of them in their 20s) from poor families. Dr Reinor's team of surgeon's does the operations and folk here help out with logistics, pre and follow up care including psychological work, speech therapy and dental work. I am in the process of updating the site and am waiting for the Luke Society here to give me the information to do this.
This page also unfortunately used the term harelip but I have now
amended this page too..
The number of children receiving an operation here in Moyobamba during the annual "operation week" has increased from 4 back in 1996 to 50 in 2001. There is no fixed income for these campaigns. My mother raises funds in England through friends and her church and there is also a certain amount of help from time to time from other countries such as Holland and the USA.
If you can think of any organizations who might be prepared to help out with the costs of these operations and the increasing amount of care surrounding these, we would be very appreciative, as it is a real struggle each year to scrape up the money for the work. We could turn away some of the children or reduce the amount of follow up care, but we would rather do neither of these.
I have suggested to the director of the Luke Society clinic that they apply for a grant from The Smile Train, and from their web site, I think we could qualify. If we do, this would be a great help.
Last year the total amount of money available for the year was something like US$25,000 and we were able to perform 50 operations and provide back up care during the year (looking for the children who are often in remote areas and who are sometimes badly neglected because of their condition, psychology, dentistry, speech therapy, transport etc) for all of them to varying degrees (sometimes dependent on the willingness of the parents to play their part).
Thank you once again for pointing out that harelip shouldn't be used.
Sincerely,
Richard Dobson
Reply:
Dear Richard,
Thank you very much for taking the term "harelip" out of the web site. I
really do appreciate that, and I'm pretty certain a lot of other clefted people
do, too!
Right now, I can't think of any organization that would be prepared to put
money towards this, but, if you wouldn't mind, I would love to copy and post
your E-Mail in some cleft clubs, and maybe the people there can be of more
assistance in the matter?
Sincerely
Kerstin Gadsden
Reply:
Dear Kerstin,
Thank you for your reply.
Yes that would be good if you could post my e-mail in some cleft clubs. Something might come of that.
I had a meeting this morning with the person in charge of the program and we are trying to sort things out for this year and prepare for the operations towards the end of the year. We need to prepare a work plan as well as a budget. Each year is more organised than the previous, but I feel we have a long way to go. I really think that a full time coordinator is becoming necesary to coordinate the many aspects of the
work, not of leastof which is sorting out the work plan for the year, budget, and where the money is going to come from. It wouldn't cost much by western standards (approximately £200 a month for a fairly well qualified person). I'm going to discuss this with my mum to see what her thoughts are on the matter as she currently acquires the majority of the funds.
As far as my previous e-mail is concerned, perhaps you could make two minor alterations to it before posting it. Speaking to the doctor in charge today, she tells me that the actual number of children and youths operated here last year for either cleft palate or cleft lip was 53 (not 50 as in my last e-mail), and the actual amount of money received was about US$ 17,000 (and not US$25,000) - US$7,000 for the actual
operations, and about US$10,000 for the pre and post operation care, including a certain amount of dentistry, speech therapy, psychology and transport, logistics etc.
Thank you for your help in doing this,
Best wishes
Richard Dobson
New Correspondence:
To: Kerstin
From: debbie@cleftadvocate.com
Would these gentlemen agree to having this *Making A Difference* correspondence posted on Cleft Advocate?
Let me know if after they review the site they would agree.
I have received countless (already!) e-mails regarding the site, many from non-profit organizations. Although I don't have the time to solicit funds for a particular charity, I would love to publish the information; then if an organization feels they can help, that would be great.
Additionally, I think a *Making A Difference* section would show many folks that it only takes ONE of us to prompt a difference...just ONE...
Thanks!
deb
Reply:
Dear Deborah,
Thank you very much for writing back to Kerstin who has passed your reply on to me.
I have had a look through your site and you have obviously been working incredibly hard to put together so much information and so many links. Well done. I have an urgent translation job to finish at the moment, so I haven't yet been able to follow up all the links I would like to.
It would be great if you could post the correspondence on Cleft Advocate, with maybe a link to our current web page.
The current page was originally done in a hurry to show one of the surgeons what could be done to let people know about the work that is being done here in the Peruvian jungle by local folk with limited finance from abroad. I am supposed to be updating it to a 10 page site (5 pages in English and 5 in Spanish), but it is taking the Luke Society longer than expected to pass me the information they want to include.
I am a great believer that people should try to live within their means and not be too dependent on outside support, especially if it is not really necessary. But the current situation here in Peru, and especially in the more remote areas, means that many children either do not get the lip and palate operations they so badly need, or they get
them very late on, when it can be very difficult or impossible to make a good repair. (Several people in their twenties have had their first operation here during the last 5 years).
If you would like me to provide any additional information or make any amendments to the information that you already have, please let me know. (The new site should of course be much more informative than the current and I hope it will be possible for us to move ahead with this soon.)
Thanks again for your offer to post information about the need here and the work that is being done.
Richard Dobson
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This cleftAdvocate page was last updated March 31, 2010
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