KIDz WITH MARFANS

PEN PALS

This is a page dedicated to the communication of kids with Marfan Syndrome.

If you would like your E mail address and information listed here, in order to communicate with others, please e mail me!



NAME AGE INFO E mail
Andrew Martin 10 Diagnosed close to birth, moderately affected. Andrew likes Nintendo. Was born legally blind but had a very successful operation and now sees pretty well.Enjoys hanging out, likes the spice girls! salmon@seasurf.net
Raymond Quagon

12

Ramond is 12 years old and loves Nintendo and he is American Indian - Ojibwe tribe (also known as Chippewa).We just found out last summer/fall that he has Marfan's. No one else in our family has it and it's been hard for Raymond also to give up the sports and basketball.
would like to correspond with other kids his age too. Please include
him on any list. He'll have to use my e-mail address until he can get
his own through our school.

clarson@lcoschools.org
Joey Mahon

11

Diagnosed since birth, 11 yrs old,
severe mutation. 5 open-hearts, 2 spinals, and 6 other major surgs. Eyes
and non-ambulatory. Is ventilator dependent at night and is
main-streamed 5th grade/severe LD's due to vision and dead spot on
brain for coding, O2 dependency and CO2 retention not to mention the
by-passes. We'd love to be in contact with other kids and parents.

 mahon@rica.net
John Morrel 15 I am homeschooled, love computers and animals, used to volunteer in an animal hospital. I have my own homepage at http://geocities.datacellar.net/Area51/Vault/6306 that even has a message board. I was diagnosed at birth and have lots of family with marfan syndrome.

shades_ez@hotmail.com
Jordan Huffman

12

I have a son who is 12 years old and he was diagnosed 2 years ago. His name
is Jordan. I'm hoping that he will correspond to others his age Marfan.
Have George write. We don't know anyone else with Marfan and it has been
quite a hard time accepting it and giving up basketball.

Thanks,
Suzanne, Jordan's Mom

huffman@parlorcity.com
Amanda Alamprese 6

diagnosed since age 4

mberly@earthlink.net
Lauren Hemphill 11

Lives in Australia, Lauren is a gorgeous, blue eyed blonde. Plays piano at home and percussion in the school orchestra. She is in the 6th grade. She likes swimming and surfing, which we do a lot of in Australia. She also has just taken up golf and loves it. Diagnosed at 2 years of age. Eye and heart problems. Lots of family with Marfan's, but they have all died from it. Lauren loves computers and would love to hear from anyone.

shempash@oe.net.au
Byron Hemphill 8 Lives in Australia with his sister, Lauren, Byron is also a good swimmer and loves the beach. He plays piano and he loves playing games on the computer. Diagnosed at 3 months. He is in the 4th grade.

shempash@oe.net.au
Rachael Beaven 7 I would love to have a pen friend to write to. My favourite singers are the Spice Girls. I have the video Spiceworld and watch it all the time. I like to sing and dance along with it. I also like to Rollerblade. My hair and eyes are brown and I am very tall for my age. I have a twin brother Nathan who does not have Marfan's. I have another two brothers Mitchell who is twelve and Ryan who is ten. My dogs name is Toby and I love him very much. We also have a bird called Bill and some fish. Two fish live in a tank in my bedroom.

BEAVENCLAN@Bigpond.com

For more information and Links on marfan syndrome, please go to the Marfans homepage

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