tag:blogger.com,1999:blog-8015897714584520167.post1216533476088859217..comments2023-11-02T10:32:26.497-04:00Comments on TREASURE yesterday DREAM of tomorrow LIVE for today: A New Normal...DiagnosisMarci Scherhttp://www.blogger.com/profile/04587914924027399846noreply@blogger.comBlogger15125tag:blogger.com,1999:blog-8015897714584520167.post-55094072001800313062012-10-13T15:10:02.981-04:002012-10-13T15:10:02.981-04:00Marci, I was led to your blog from a post on Face...Marci, I was led to your blog from a post on Facebook by SWAN. I happy you have gotten a diagnosis! I was wondering if there was anyway you could contact me via e-mail to talk a little bit. You see, my son is also undiagnosed and he has a deletion on chromosome 14 that includes the VRK1 gene. He inherited the deletion from his dad (and he is normal). The Dr.'s haven't completely ruled out that the VRK1 is the cause of his issues. I was wondering if I could share with you our symptoms to see how they compare to your son. Thank you!!<br /><br />Shelly Thompson<br />brish0519@yahoo.comAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8015897714584520167.post-1462316675919769212012-07-29T14:47:36.171-04:002012-07-29T14:47:36.171-04:00You're blog is wonderful. At last you have a d...You're blog is wonderful. At last you have a diagnosis and I know you all are doing all you can for Ian. He is the sweetest child and let's hope he can enjoy each day to it's fullest. The blog can be very therapeutic for you. I hope it will be. XOXRuth Cohen Rossnoreply@blogger.comtag:blogger.com,1999:blog-8015897714584520167.post-77742538978554776232012-07-29T14:47:11.036-04:002012-07-29T14:47:11.036-04:00So glad there is finally a definitive diagnosis! I...So glad there is finally a definitive diagnosis! It is because of your persistence and determination that there is finally some clarity. You should be proud of yourselves! I am proud of you and of course of the Amazing Ian!!Lara Wynnenoreply@blogger.comtag:blogger.com,1999:blog-8015897714584520167.post-21550893533476341972012-07-29T14:46:54.061-04:002012-07-29T14:46:54.061-04:00I know you've been waiting a long time for thi...I know you've been waiting a long time for this. With a diagnosis, you can now make plans, for treatment and the future. :)<br /><br />Lisa Goldberg BurgunderAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8015897714584520167.post-72855364632422685532012-07-29T14:46:36.786-04:002012-07-29T14:46:36.786-04:00A diagnosis is wonderful news. I agree - Ian is a ...A diagnosis is wonderful news. I agree - Ian is a gift!<br /><br />Tamara Jayne FlaxAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8015897714584520167.post-80799580940496922662012-07-29T14:46:18.938-04:002012-07-29T14:46:18.938-04:00I'm so happy for you guys that you've foun...I'm so happy for you guys that you've found a diagnosis finally. It's so great that now they can come up with a treatment plan specific to his diagnosis. :-)<br /><br />Amy Eisenberg SamayAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8015897714584520167.post-51025694569107941802012-07-29T14:45:56.378-04:002012-07-29T14:45:56.378-04:00That is great news...with a diagnosis comes a new ...That is great news...with a diagnosis comes a new normal! I am so glad to hear this.<br /><br />Tara WebbAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8015897714584520167.post-55195323150924526572012-07-29T14:45:28.741-04:002012-07-29T14:45:28.741-04:00Mazel Tov on finding Ian's diagnosis. It's...Mazel Tov on finding Ian's diagnosis. It's a wonderful relief when you finally know what to expect in the future. It's also a blessing to meet others in your exact same situation, with the same diagnosis. Love and kisses to your precious Ian. ♥<br /><br />Susan Schwartz TanenholzAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8015897714584520167.post-90020016956139076392012-07-29T14:45:04.635-04:002012-07-29T14:45:04.635-04:00Wow, so glad you have finally gotten a diagnosis. ...Wow, so glad you have finally gotten a diagnosis. Ian is such a beautiful boy and he always seems so happy. Despite all the struggles he faces, he is a ray of light that builds a rainbow. Keep up the great work Mom, Dad & Becca. You are all the perfect family that he needs.<br /><br />Heather Schmidt YoungAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8015897714584520167.post-5519342596338435572012-07-29T14:44:47.198-04:002012-07-29T14:44:47.198-04:00finally a diagnosis
Annelise Sullivanfinally a diagnosis<br /><br />Annelise SullivanAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8015897714584520167.post-85057740294157603272012-07-29T14:44:30.220-04:002012-07-29T14:44:30.220-04:00Thanks for sharing this with us Marci Weinberg Sch...Thanks for sharing this with us Marci Weinberg Scher! I shared with Mike and he sends his warm regards your way! Have you found a motorcycle yet? :)<br /><br />Kendra BoberAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8015897714584520167.post-64089907367544105592012-07-29T14:23:50.169-04:002012-07-29T14:23:50.169-04:00Marci,
I am so glad that you finally have some an...Marci,<br /><br />I am so glad that you finally have some answers. Ian is a remarkable boy with a remarkable family! That you for allowing to follow your journey through your blogs and updates. I miss you!<br /><br />Love,<br />Jenn OrlandoAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8015897714584520167.post-3449358525608395632012-07-29T14:23:24.801-04:002012-07-29T14:23:24.801-04:00What can I say, it is beautiful. What a family yo...What can I say, it is beautiful. What a family you have! Heart warming, wrenching, determined and so much love. Need I say more? <br /><br />Melody CooperAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8015897714584520167.post-70598186363121128252012-07-26T14:28:20.076-04:002012-07-26T14:28:20.076-04:00Your approach to the whole situation is something ...Your approach to the whole situation is something to be admired. You truly are very impressive in how you continue to move forward and make the best of what I know is an extremely difficult situation. Iain is very lucky to have you and Brian as parents!<br /><br />EllenAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8015897714584520167.post-40645788255130926362012-07-24T23:27:12.936-04:002012-07-24T23:27:12.936-04:00I am glad that you got some answers. Now the next...I am glad that you got some answers. Now the next chapter in your life will begin. Give me a call or email sometime so we can chat. I love your description of Ian. You are all a remarkable family!<br /><br />Carye EverettCaryehttps://www.blogger.com/profile/00257387953986261110noreply@blogger.com