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RE: [acrodysostosis] Granson has this disease
Welcome Dani,
you have come to the right place! We are the @ Team and in touch with about 10
families worldwide.
We live in London and our 13 year old daughter Anna has the condition. (See attached
article from our local paper re the meeting of 4 families
earlier this year)
Is your grandson 18 years or 18 months?
What information are you seeking? Where do you live? We have several contacts
in the USA.
Would you like to be put in touch with the
group?
Looking forward to hearing from you again
soon.
Best wishes
Scilla & Glyn Morgan
-----Original
Message-----
From: dani_nowthencreations
[mailto:rcalgal415@...]
Sent: 05 November 2002 23:20
To: acrodysostosis@yahoogroups.com
Subject: [acrodysostosis] Granson
has this disease
I just found this group - now
I am wondering if it is even still
active?
I just got the diagnosis on the 18 grandson I am
raising that he has
this disease. He has had many problems for a
long time now and when
I complain to doctors about it, they would just
ignore me.
I would like to know more about this disease from
real peole who are
involved with real children who do have it - not
just a technical
view of it from a doctor.
I have an appointment with his doctor on the 20th
of November and
they want to talk to me more about it.
Thank you for any help you can give me -- Dani
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"Morgan Family" <family@...>
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CHILDREN WHO HAVE VERY RARE ILLNESS ARE UNITED
A touching playtime
REPORT By JAMES KEMAL • PICTURES By STEVE POSTON
•(From left) Anna, Lena and Brett who all have acrodysostosis which can lead to restricted growth |
IT was a very special day in Forest Gate when four children with an extremely rare genetic disease met for the first time.
Anna Morgan, 12, has grown up in Forest Gate. She was born healthy at Newham General Hospital in Plaistow.
But two years later, doctors at Great Ormond Street Hospital diagnosed Anna as having a rare genetic disorder known as acrodysostosis.
It leads to learning difficulties and some physical impairments including a small nose, hands and feet, bone abnor
malities and restricted growth.
Last September she started attending Sarah Bonnell School in Stratford.
 •Anna |
Mother Scilla said: "Through the Internet we were able to make contact with other families who have children with the same disease."
They are Lena, nine, from Germany; Brett, ten, who lives in America, and Matthew, ten, from Manchester.
Neither Lena nor Brett have come across children with acrodysostosis in their own countries.
Anna and Matthew had first met several years ago. Scilla said: "It was difficult to gauge whether they recognised their similarities.
"Then last year we were fortunate enough to visit Lena in Germany. Her and Anna look so alike and were thrilled
to meet.
 •Brett |
"They exchanged clothes and, though they could not understand each others' languages, they got on well. Anna has not stopped talking about Lena since."
The four children, known as the 'A team', met at Anna's home in Claremont Road.
Scilla said: "One family stayed with us and we managed to persuade some of our friends to accommodate the other families."
They played football in the garden, visited Madame Tussaud's and London Zoo.
It is hoped the get-together will help raise awareness about acrodysostosis.
 •Lena |
Because the disease is so rare, there has been very little research into its disabling effects.
If you know someone with acrodysostosis, you can get in touch with the families via the Recorder on (020) 8472 1421.
 •Matthew |
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