Guest guest Posted November 16, 1999 Report Share Posted November 16, 1999 Sharon, I can see why it caught his attention. It covered all the bases of " What could possibly happen next " or " How can it get any worse " . I have know your story for a while,but reading it again made me cry. Its so sad. I knew people would be writing their personal stories, and knew that most would be sadder than mine, like yours. That is why I chose to write about the controversy and some of the issues surrounding this disease, more than my personal story. So I'm so happy yours caught someone's attention. I think your's should also be one of the Christmas stories Lovey suggested. I can't believe that someone like Oprah or Montel wouldn't be interested. What a story! Vicki What was the doctor's name that replied to you? Didn't he have an email address in teh " from " section when he wrote you? >From: " melillo " <mellillo1@...> > >I thought I would send along my letter so you could see it. It is a little >long and I didn't think that good but real glad it got this dr's attention. >What show is he from? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 1999 Report Share Posted November 16, 1999 In a message dated 11/16/1999 12:35:50 PM Eastern Standard Time, mellillo1@... writes: Did anyone get this to Rita Stanley? She is the *expert* in this area and I'm sure is qualified to handle this. << This is the response I got back today from my letter: " Your story is quite disturbing and worth further review. Please give me the name of the Lyme doctors currently under review, their addresses and phone numbers. Thanks! Ian K. , M.D. " What do I tell him. Respond quickly with advice. >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 1999 Report Share Posted November 16, 1999 Sharon, Write to Rita Stanley ritastan@... she will know what to do, Good luck, Marta [Lyme-aid] EXCITING NEWS >From: " melillo " <mellillo1@...> > >This is the response I got back today from my letter: > > " Your story is quite disturbing and worth further review. Please give me >the >name of the Lyme doctors currently under review, their addresses and phone >numbers. Thanks! > >Ian K. , M.D. " > >What do I tell him. Respond quickly with advice. >Sharon > >>Send to -Offtopiconelist messages unrelated to lyme, please. >/archive/lyme-aid >/archives.cgi/Lyme-Documents >To unsubscribe, send email to -unsubscribeonelist >You may substitute " subscribe " , or " digest " or " normal " for >the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank both the message and subject header. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 1999 Report Share Posted November 16, 1999 Please share whatever information you find to be relevant. Ian K. , M.D.<<< this was the response i got from him. kay >>>>From: " melillo " <mellillo1@...> This is the response I got back today from my letter: " Your story is quite disturbing and worth further review. Please give me the name of the Lyme doctors currently under review, their addresses and phone numbers. Thanks! Ian K. , M.D. " What do I tell him. Respond quickly with advice. Sharon<<< Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 1999 Report Share Posted November 16, 1999 we got THREE hits from this man. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2003 Report Share Posted May 6, 2003 Congratulations! Rabbitslover@... wrote:Hello Everyone: Just to let you all know that brother/sister (Steve & Debbie) team will be implanted on the same day on June 18, 2003. Thanks to all for the good wishes. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2003 Report Share Posted May 6, 2003 Congratulations!! Rabbitslover@... wrote:Hello Everyone: Just to let you all know that brother/sister (Steve & Debbie) team will be implanted on the same day on June 18, 2003. Thanks to all for the good wishes. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2003 Report Share Posted September 10, 2003 Congrats Sue! Hope to see you in NYC! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2003 Report Share Posted September 10, 2003 Hi Everyone!!! I must join the bandwagon to say that we just found out today that and were also chosen to be on the BIG screen. I feel sooo honored!! from Calif. mom to and Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2003 Report Share Posted September 10, 2003 Yeah!!! You are so supportive of our 10 (well, 60 for the last 6 years, LOL) secs of fame! Try to send me the pic so i can look for them! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2003 Report Share Posted September 10, 2003 So will you be traveling to the right coast???? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2003 Report Share Posted September 10, 2003 Yeah!! I found out today that a pic of Mac & Kit was also chosen!! Jill Mom to Mac (5, Ds) and Kit (2, Ds) > Hi Everyone, wanted to let you know that we found out today that Alyssa's > picture will be on the BIG SCREEN in New York on Oct. 19th for the National Down > Syndrome Society's Buddy Walk. We've very excited and hoping to be able to see > it in person this year. Sue & Alyssa > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2003 Report Share Posted September 11, 2003 I received my letter yesterday that Kyrell will be on the big screen also! >From: sudsystuff@... >thrill@..., Sue22053@..., >Subject: Re: Exciting News >Date: Wed, 10 Sep 2003 21:30:12 EDT > >Hi Everyone!!! >I must join the bandwagon to say that we just found out today that >and > were also chosen to be on the BIG screen. I feel sooo honored!! > >from Calif. mom to and _________________________________________________________________ Send and receive larger attachments with Hotmail Extra Storage. http://join.msn.com/?PAGE=features/es Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2009 Report Share Posted January 2, 2009 Hi Everyone, I lurk here. It amazes me the amount of information that is available on apraxia compared to when we started on our journey. My daughter is 21 and has a dx of global apraxia . Late walker, talker, you name it she was late at it. The news part.... is going to the World Winter Games for Special Olympics in February. She is Team USA Alpine!! Pretty Cool. The other piece I wanted to share is my globally apraxic daughter has become a very proficient weaver. On the big loom, makes her own fabric and then turns them into pretty things like pocketbooks, scarves etc. Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2009 Report Share Posted January 2, 2009 Sue that is awesome news! Has she thought of selling any of her items on Ebay? I'm sure many of us would love to at least see what she makes if you could upload images to the photo section here. How is her speech today? How is she with everything else? It would be wonderful if you could share more as many of us with older children love to hear from those of you who have even older children! We'll all be rooting for " Team USA Alpine " Please do keep us posted on everything! And yes -very cool! ===== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2009 Report Share Posted January 3, 2009 Thats an awesome story Sue. Thanks for giving me hope. Kris W On Jan 2, 2009, at 3:11 PM, dcoviello@... wrote: > Hi Everyone, > I lurk here. It amazes me the amount of information that is > available on apraxia compared to when we started on our journey. My > daughter is 21 and has a dx of global apraxia . Late walker, > talker, you name it she was late at it. > > The news part.... is going to the World Winter Games for > Special Olympics in February. She is Team USA Alpine!! Pretty Cool. > > The other piece I wanted to share is my globally apraxic daughter > has become a very proficient weaver. On the big loom, makes her own > fabric and then turns them into pretty things like pocketbooks, > scarves etc. > > Sue > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2009 Report Share Posted January 6, 2009 Hi , Haven't been on the computer all week. Thanks!! I gave most of her weaved things has gifts for Christmas. She liked the ebay idea!! We will post some pictures and let you know when we do. In answer to the speech question...when she was 3, we were told that she would never have any useable language.No real language til the age of 5. Always seemed to make more gains over the summer. Now, she does public speaking for Special Olympics and talked at an event with 800 people and the governor was there. He says she upstaged him. does sound young when she talks. Has had probably every type of speech therapy out there. Did get Prompt the last year of school. The good thing is that unless she is excited or upset people understand her. When she is upset or excited, she just can't get it out. has worked as a camp couselor the last 5 summers. A very useful tool there were " cue cards " that gave her a starting point for each activity. It provided framework which helped her be more successful. Sensory has been an issue. Been a bit worse since she finished school. Not sure why. Hope I didn't go on to long. Sue [ ] Re: Exciting News Sue that is awesome news! Has she thought of selling any of her items on Ebay? I'm sure many of us would love to at least see what she makes if you could upload images to the photo section here. How is her speech today? How is she with everything else? It would be wonderful if you could share more as many of us with older children love to hear from those of you who have even older children! We'll all be rooting for " Team USA Alpine " Please do keep us posted on everything! And yes -very cool! ===== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2009 Report Share Posted January 6, 2009 Hi Jenna, Thanks!! Will keep you posted. Over 3000 athletes from all over the world are coming to the World Games. It should be an amazing experience. Sue [ ] Re: Exciting News Sue, How exciting for you guys! You must be SO proud of her :-) I have to say, even when times are tough, the Special Olympics is one organization that I still give money to. I even donated to them way before we had children. Little did I know I would end up with a special needs child! Since my son is only 2.9 yo, I love to hear how older kids are doing with the diagnosis of apraxia and/or dyspraxia. Cheers, Jenna (mom to Larsyn 2.9 yo w/severe verbal apraxia, dyspraxia, hypotonia and SPD) > > Hi Everyone, > I lurk here. It amazes me the amount of information that is available on apraxia compared to when we started on our journey. My daughter is 21 and has a dx of global apraxia . Late walker, talker, you name it she was late at it. > > The news part.... is going to the World Winter Games for Special Olympics in February. She is Team USA Alpine!! Pretty Cool. > > The other piece I wanted to share is my globally apraxic daughter has become a very proficient weaver. On the big loom, makes her own fabric and then turns them into pretty things like pocketbooks, scarves etc. > > Sue > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2009 Report Share Posted January 6, 2009 Thanks, a. Re: [ ] Exciting News Thats an awesome story Sue. Thanks for giving me hope. Kris W On Jan 2, 2009, at 3:11 PM, dcoviello@... wrote: > Hi Everyone, > I lurk here. It amazes me the amount of information that is > available on apraxia compared to when we started on our journey. My > daughter is 21 and has a dx of global apraxia . Late walker, > talker, you name it she was late at it. > > The news part.... is going to the World Winter Games for > Special Olympics in February. She is Team USA Alpine!! Pretty Cool. > > The other piece I wanted to share is my globally apraxic daughter > has become a very proficient weaver. On the big loom, makes her own > fabric and then turns them into pretty things like pocketbooks, > scarves etc. > > Sue > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2009 Report Share Posted January 6, 2009 wow Sue! That's something that's always been a bit harder for Tanner is public speaking. For example he was doing so well that when his brother graduated from middle school last year (this year he is in 9th- so HS) the director of the school asked Tanner to say a few words. Tanner wrote a small little speech on his own -but when he got up there he broke up -his speech impairment was very obvious. In normal conversation it's not. Did your daughter ever go through that in front of people? If so how did she overcome that? I had read that drama classes -or putting him in a play would be good for his public speaking. I remember 's son Khalid (who is now in his 20s) took public speaking for this reason -it was tough for him too -so something he worked hard to overcome. Thanks for letting me know and also thanks for sharing! Looking forward to seeing the beautiful things that made on Ebay! ===== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2009 Report Share Posted February 24, 2009 Hi Sue!! Give a huge hug from me!!! I found her page online- WOW that is SO exciting!!! Did you ever find out if she'd be interested in selling her weaving on Ebay? Maybe she can weave " gold medals " for us to buy to give to our kids from a real life Gold Medal Athlete!!! ===== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2009 Report Share Posted February 24, 2009 Well, congratulations to your daughter!!!! :0) Wow, a weaving loom... is it a commercial loom..?? I am not even sure I can do that. All I can do is a potholder. > > Hi Everyone, > I lurk here. It amazes me the amount of information that is available on apraxia compared to when we started on our journey. My daughter is 21 and has a dx of global apraxia . Late walker, talker, you name it she was late at it. > > The news part.... is going to the World Winter Games for Special Olympics in February. She is Team USA Alpine!! Pretty Cool. > > The other piece I wanted to share is my globally apraxic daughter has become a very proficient weaver. On the big loom, makes her own fabric and then turns them into pretty things like pocketbooks, scarves etc. > > Sue > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2009 Report Share Posted February 26, 2009 Hi , said thanks for the hug!! We will get some of the weaved stuff on ebay. Between the World Games and we just had an unexpected death-we haven't had a chance. just finished a scraf today that she is donating to the program that she does her ski training for a craft auction. It came out beautiful. They are thriled to have something that a gold medalist made. Sue [ ] Re: Exciting News Hi Sue!! Give a huge hug from me!!! I found her page online- WOW that is SO exciting!!! Did you ever find out if she'd be interested in selling her weaving on Ebay? Maybe she can weave " gold medals " for us to buy to give to our kids from a real life Gold Medal Athlete!!! ===== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2009 Report Share Posted February 26, 2009 Thanks. It is a Saroi (I think I spelled that wrong) loom. Sits on the floor, have to push pedails with your feet and then move things across the top. Looks very complicated. She doesn't always sit still for long but can weave for 2-3 hrs without taking a break. She loves it. SUe [ ] Re: Exciting News Well, congratulations to your daughter!!!! :0) Wow, a weaving loom... is it a commercial loom..?? I am not even sure I can do that. All I can do is a potholder. > > Hi Everyone, > I lurk here. It amazes me the amount of information that is available on apraxia compared to when we started on our journey. My daughter is 21 and has a dx of global apraxia . Late walker, talker, you name it she was late at it. > > The news part.... is going to the World Winter Games for Special Olympics in February. She is Team USA Alpine!! Pretty Cool. > > The other piece I wanted to share is my globally apraxic daughter has become a very proficient weaver. On the big loom, makes her own fabric and then turns them into pretty things like pocketbooks, scarves etc. > > Sue > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2010 Report Share Posted October 15, 2010 Thanks Margaret fingers crossed Best wishesMaggie Exciting news Netmums has been shortlisted for Website of the Year 2010 and with your help we have a good chance of winning!Click this link to vote: http://www.thegoodwebguide.co.uk/votefor/netmums.com Please could I ask you to circualte as widely as possible through all your links and facebook and ask people to vote it only takes a few seconds? Best wishesMaggie Quote Link to comment Share on other sites More sharing options...
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