Guest guest Posted September 1, 2003 Report Share Posted September 1, 2003 I loved reading the article and seeing the pictures. It sounds like an amazing experience. I am so glad that Seth and Ben were able to do this. Thanks for sending the link. Sam is doing so-so. We're trying a 24 hr a day drip now of Factor 7a to see if it helps the bleeding. he had to have a PICC line placed for this because it can not mix with any thing else and we need his central line for other things. If it works we are looking at placing a second central line so he will in effect have 4 ports to run meds. His ferritin is very high now and he needs to start chelation which will also need its own line. So things have been a bit stressful here. However, as always he seems oblivious to how ill he is. Right now he is playing Power rangers with Zach and very happy. A good reminder to me of why we do all that we are doing for him - so he can play and enjoy life. Zach is okay. Starts school tomorrow with his three 1/2 days a week. 5th grade this year! he is not looking forward to it. The girls are fine too - especially fine in fact since i said I would take them shopping today for more clothes (in addition to all the clothes I bought them yesterday). Anne FW: newspaper articleDear Mito friends, my family returned last week from Seth's Make a Wish trip to Alaska to see the eagles and whales. We had a great time. Here is a link to an article that was in Tuesday's Juneau's Capital Weekly paper, www.capweek.com. Also, there are three local families of Seattle's Children's Hospital who are patients of Dr. Saneto. We have created a guild to raise funds to support his work on research there. We are having an auction Sept. 19. Please see this link as well, www.nwmito-research.org. Go to events to see about our auction. Also please see the page about Cassandra. She was the daughter of the , one of the three founding families of this guild. However, she passed away in May of mito. We are motivated for her honor as well. Pressing on, Cindy Cruz, mom to Seth (12) and Ben (7) both mitoPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2003 Report Share Posted September 1, 2003 I loved reading the article and seeing the pictures. It sounds like an amazing experience. I am so glad that Seth and Ben were able to do this. Thanks for sending the link. Sam is doing so-so. We're trying a 24 hr a day drip now of Factor 7a to see if it helps the bleeding. he had to have a PICC line placed for this because it can not mix with any thing else and we need his central line for other things. If it works we are looking at placing a second central line so he will in effect have 4 ports to run meds. His ferritin is very high now and he needs to start chelation which will also need its own line. So things have been a bit stressful here. However, as always he seems oblivious to how ill he is. Right now he is playing Power rangers with Zach and very happy. A good reminder to me of why we do all that we are doing for him - so he can play and enjoy life. Zach is okay. Starts school tomorrow with his three 1/2 days a week. 5th grade this year! he is not looking forward to it. The girls are fine too - especially fine in fact since i said I would take them shopping today for more clothes (in addition to all the clothes I bought them yesterday). Anne FW: newspaper articleDear Mito friends, my family returned last week from Seth's Make a Wish trip to Alaska to see the eagles and whales. We had a great time. Here is a link to an article that was in Tuesday's Juneau's Capital Weekly paper, www.capweek.com. Also, there are three local families of Seattle's Children's Hospital who are patients of Dr. Saneto. We have created a guild to raise funds to support his work on research there. We are having an auction Sept. 19. Please see this link as well, www.nwmito-research.org. Go to events to see about our auction. Also please see the page about Cassandra. She was the daughter of the , one of the three founding families of this guild. However, she passed away in May of mito. We are motivated for her honor as well. Pressing on, Cindy Cruz, mom to Seth (12) and Ben (7) both mitoPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2003 Report Share Posted September 1, 2003 Anne, I really like what you said about the whole reason for doing it all is so that the kids can be happy. It reminds me of the scripture, "Man is, that he may have joy." Bottom line for God to us, His children, too, is that he created us to feel happiness and this, because He loves us just like we love our own children and want the best for them. Like He said Himself, it all boils down to one word- LOVE Scoggins -----Original Message-----From: Anne K Juhlmann Sent: Monday, September 01, 2003 8:56 AMTo: Mito Subject: Re: FW: newspaper article I loved reading the article and seeing the pictures. It sounds like an amazing experience. I am so glad that Seth and Ben were able to do this. Thanks for sending the link. Sam is doing so-so. We're trying a 24 hr a day drip now of Factor 7a to see if it helps the bleeding. he had to have a PICC line placed for this because it can not mix with any thing else and we need his central line for other things. If it works we are looking at placing a second central line so he will in effect have 4 ports to run meds. His ferritin is very high now and he needs to start chelation which will also need its own line. So things have been a bit stressful here. However, as always he seems oblivious to how ill he is. Right now he is playing Power rangers with Zach and very happy. A good reminder to me of why we do all that we are doing for him - so he can play and enjoy life. Zach is okay. Starts school tomorrow with his three 1/2 days a week. 5th grade this year! he is not looking forward to it. The girls are fine too - especially fine in fact since i said I would take them shopping today for more clothes (in addition to all the clothes I bought them yesterday). Anne FW: newspaper article Dear Mito friends, my family returned last week from Seth's Make a Wish trip to Alaska to see the eagles and whales. We had a great time. Here is a link to an article that was in Tuesday's Juneau's Capital Weekly paper, www.capweek.com. Also, there are three local families of Seattle's Children's Hospital who are patients of Dr. Saneto. We have created a guild to raise funds to support his work on research there. We are having an auction Sept. 19. Please see this link as well, www.nwmito-research.org. Go to events to see about our auction. Also please see the page about Cassandra. She was the daughter of the , one of the three founding families of this guild. However, she passed away in May of mito. We are motivated for her honor as well. Pressing on, Cindy Cruz, mom to Seth (12) and Ben (7) both mitoPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2003 Report Share Posted September 1, 2003 Anne, I really like what you said about the whole reason for doing it all is so that the kids can be happy. It reminds me of the scripture, "Man is, that he may have joy." Bottom line for God to us, His children, too, is that he created us to feel happiness and this, because He loves us just like we love our own children and want the best for them. Like He said Himself, it all boils down to one word- LOVE Scoggins -----Original Message-----From: Anne K Juhlmann Sent: Monday, September 01, 2003 8:56 AMTo: Mito Subject: Re: FW: newspaper article I loved reading the article and seeing the pictures. It sounds like an amazing experience. I am so glad that Seth and Ben were able to do this. Thanks for sending the link. Sam is doing so-so. We're trying a 24 hr a day drip now of Factor 7a to see if it helps the bleeding. he had to have a PICC line placed for this because it can not mix with any thing else and we need his central line for other things. If it works we are looking at placing a second central line so he will in effect have 4 ports to run meds. His ferritin is very high now and he needs to start chelation which will also need its own line. So things have been a bit stressful here. However, as always he seems oblivious to how ill he is. Right now he is playing Power rangers with Zach and very happy. A good reminder to me of why we do all that we are doing for him - so he can play and enjoy life. Zach is okay. Starts school tomorrow with his three 1/2 days a week. 5th grade this year! he is not looking forward to it. The girls are fine too - especially fine in fact since i said I would take them shopping today for more clothes (in addition to all the clothes I bought them yesterday). Anne FW: newspaper article Dear Mito friends, my family returned last week from Seth's Make a Wish trip to Alaska to see the eagles and whales. We had a great time. Here is a link to an article that was in Tuesday's Juneau's Capital Weekly paper, www.capweek.com. Also, there are three local families of Seattle's Children's Hospital who are patients of Dr. Saneto. We have created a guild to raise funds to support his work on research there. We are having an auction Sept. 19. Please see this link as well, www.nwmito-research.org. Go to events to see about our auction. Also please see the page about Cassandra. She was the daughter of the , one of the three founding families of this guild. However, she passed away in May of mito. We are motivated for her honor as well. Pressing on, Cindy Cruz, mom to Seth (12) and Ben (7) both mitoPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2003 Report Share Posted September 1, 2003 Anne, I really like what you said about the whole reason for doing it all is so that the kids can be happy. It reminds me of the scripture, "Man is, that he may have joy." Bottom line for God to us, His children, too, is that he created us to feel happiness and this, because He loves us just like we love our own children and want the best for them. Like He said Himself, it all boils down to one word- LOVE Scoggins -----Original Message-----From: Anne K Juhlmann Sent: Monday, September 01, 2003 8:56 AMTo: Mito Subject: Re: FW: newspaper article I loved reading the article and seeing the pictures. It sounds like an amazing experience. I am so glad that Seth and Ben were able to do this. Thanks for sending the link. Sam is doing so-so. We're trying a 24 hr a day drip now of Factor 7a to see if it helps the bleeding. he had to have a PICC line placed for this because it can not mix with any thing else and we need his central line for other things. If it works we are looking at placing a second central line so he will in effect have 4 ports to run meds. His ferritin is very high now and he needs to start chelation which will also need its own line. So things have been a bit stressful here. However, as always he seems oblivious to how ill he is. Right now he is playing Power rangers with Zach and very happy. A good reminder to me of why we do all that we are doing for him - so he can play and enjoy life. Zach is okay. Starts school tomorrow with his three 1/2 days a week. 5th grade this year! he is not looking forward to it. The girls are fine too - especially fine in fact since i said I would take them shopping today for more clothes (in addition to all the clothes I bought them yesterday). Anne FW: newspaper article Dear Mito friends, my family returned last week from Seth's Make a Wish trip to Alaska to see the eagles and whales. We had a great time. Here is a link to an article that was in Tuesday's Juneau's Capital Weekly paper, www.capweek.com. Also, there are three local families of Seattle's Children's Hospital who are patients of Dr. Saneto. We have created a guild to raise funds to support his work on research there. We are having an auction Sept. 19. Please see this link as well, www.nwmito-research.org. Go to events to see about our auction. Also please see the page about Cassandra. She was the daughter of the , one of the three founding families of this guild. However, she passed away in May of mito. We are motivated for her honor as well. Pressing on, Cindy Cruz, mom to Seth (12) and Ben (7) both mitoPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2003 Report Share Posted September 14, 2003 Bethany, What a nice article they did on her. Our local newspaper did the same for us when we were raising money for Dr. Boles and his research on MIDS. I have three effected Mito MIDS kids with elevated ethlymalonate levels. Keep up the fight!!!!!! Hugs O. ( Mom to Miss Kira almost 13yrs, social butterfly of the JR. High, 10, Mr. trumpet player himself, and Krisalynn 8 finally coming out of her shell and blossoming. All 3 MIDS Maternally Inherited Dysautonomia, elevated ethlymalonate Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2003 Report Share Posted September 14, 2003 our local paper did an article on our daughter, anna grace, and it is in today's paper. to view: www.times-news.com and it is titled: " family raises awareness of daughter's disease " bethany mom to brennan 6, palmer & anna grace (leighs) 3 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2003 Report Share Posted September 14, 2003 what town aare you in as i cant not get the site to open cyndi newspaper article our local paper did an article on our daughter, anna grace, and it is in today's paper. to view: www.times-news.com and it is titled: "family raises awareness of daughter's disease"bethanymom to brennan 6, palmer & anna grace (leighs) 3Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2003 Report Share Posted September 14, 2003 cyndi, we live in cumberland, maryland. try putting cumberland times news in your search engine. > what town aare you in as i cant not get the site to open > cyndi > > newspaper article > > our local paper did an article on our daughter, anna grace, and it > is in today's paper. to view: www.times-news.com and it is > titled: " family raises awareness of daughter's disease " > > bethany > mom to brennan 6, palmer & anna grace (leighs) 3 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2003 Report Share Posted September 14, 2003 bethany, what a great article. Finally, Mito getting some publicity! you guys look great. It is nice to be able to put some faces to the names! Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2003 Report Share Posted September 16, 2003 Bethany, What a wonderful article on Grace! The pictures were great as well. So glad she is doing well. Kathy, grandma to Audrey, 2 years Quote Link to comment Share on other sites More sharing options...
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