Guest guest Posted December 31, 2000 Report Share Posted December 31, 2000 Some more info on can be found at http://www.primordialdwarfism.com Click " profiles " and then " more profiles " . And you are quite welcome I would like to know how she is and what she is up to. Thanks > again Bob.... > > kimber Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2000 Report Share Posted December 31, 2000 Check out the site http://www.primordialdwarfism.com ; but for convenience here is what was said on the site re: : _________________________________________________________ Hi Everyone, My name is (Trish) ez (used to be Mayhugh). My daughter's name is Mayhugh. She is 22 1/2 years old, has a permanent tracheostomy, and has been diagnosed as having Seckel's Syndrome with a later diagnosis of Osteodysplastic Primordial Type II of Majewski. She has had Herrington Rod surgery for Scoliosis at age 9 and is now 30 inches tall and weighs approx. 27 lbs. She graduated from High School with honors in " 97 " , even though she did use the resource program in school and had a full time health aide that attended with her. (So much for the " she will be a vegetable and will never develop " , garbage that we were told at 2 weeks of age). She is now attending a Jr. College here in Livermore, CA. She is taking several resource classes and volunteering at her chuch 2 days a week. She still has some problems with long term memory , her voice is still hard at times to understand due to the high pitch and the trach tube, her spelling in simply awful, and she is waiting for hip replacement surgery, but all in all, she is a great person! She has recently moved to her father's home and is not yet on the internet, but I am curious to know if there are any of you who have older young adults who are as small , or nearly as small as she is. I am sure she would love to hear from them as she has always been the oldest of the group of kids with her diagnosis. We have been in touch with a couple of older people, but no one with either her exact diagnosis, or her extremely small stature. We have attended a few of the conventions, but there never seems to be anyone she can really relate to....Most of the other 'Little People " tend to treat her as an oddity since she is so much smaller than most of them and she has never quite felt like she really " fit in " , though she does enjoy a good party! LOL I know I have had mail from a few of you in the past and I am sorry if I never answered your mail. We have gone through about 10 years of turmoil here and finally seem to be settling down to more normal lives. I also have a 17 year old average size son named . It's nice to know that there are others out there and I am really glad that most of you have found each other when your kids are really young! Wish there had been more of a support system when Steph was growing up! Nice to be in touch! Take Care! Trish ez > Some more info on can be found at > http://www.primordialdwarfism.com Click " profiles " and then > " more profiles " . And you are quite welcome Quote Link to comment Share on other sites More sharing options...
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