tag:blogger.com,1999:blog-1403927290529132193.post4380545347572370613..comments2023-06-03T07:22:35.781-04:00Comments on Maddie's Mission: With a Little Help From My FriendsUnknownnoreply@blogger.comBlogger16125tag:blogger.com,1999:blog-1403927290529132193.post-78379043294149004472010-01-16T15:22:00.594-05:002010-01-16T15:22:00.594-05:00Thank you for creating this blog. I was just diagn...Thank you for creating this blog. I was just diagnosed with adult onset Pompe and it has been difficult, if not impossible to find informaiton about the infusion treatments online. Your blog has provided me with a lot of information I have not been able to find anywhere else. Thank you and best of luck to you and your family as you continue with your Pompe journey.<br /><br />MoniqueMoniquehttp://purplelv93.wordpress.comnoreply@blogger.comtag:blogger.com,1999:blog-1403927290529132193.post-52685710874711529132010-01-10T12:37:37.516-05:002010-01-10T12:37:37.516-05:00Thanks Matt and Donna for this update. I can'...Thanks Matt and Donna for this update. I can't imagine how hard it is for your family to absorb all of this information about your daughter. From all of the comments, it sounds like you -- and Maddie -- will manage with grace and aplomb, and my prayers are with you. I look forward to following your journey.<br />Love,<br />(your cousin)Eileen Lyonnoreply@blogger.comtag:blogger.com,1999:blog-1403927290529132193.post-84580492407380732902010-01-10T07:42:14.507-05:002010-01-10T07:42:14.507-05:00Three Rules of Work: 1. Out of clutter, find simpl...Three Rules of Work: 1. Out of clutter, find simplicity. 2. From discord, find harmony. <br /> 3. In the middle of difficulty lies opportunity. <br /> -Albert Einstein <br /><br />Now get to work !Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1403927290529132193.post-59201353467253609322010-01-09T21:56:09.444-05:002010-01-09T21:56:09.444-05:00We are with you guys -- praying and hoping always....We are with you guys -- praying and hoping always. We would be happy to help drive to/from treatments or hold down the home front while you are at CHOP. Just say the word. Love to all. The WilliamsAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-1403927290529132193.post-16846466076288706952010-01-09T11:26:20.553-05:002010-01-09T11:26:20.553-05:00Maddie,
Wow, you have a long road ahead, but we k...Maddie, <br />Wow, you have a long road ahead, but we know you will do fine. You have the strength,humor and the support of great family and friends to help you.<br />Hang in.<br />Love, The Barr FamilyUnknownhttps://www.blogger.com/profile/12290552834323267363noreply@blogger.comtag:blogger.com,1999:blog-1403927290529132193.post-33540483323460664892010-01-09T07:28:54.752-05:002010-01-09T07:28:54.752-05:00Howard Schultz, CEO Starbucks Coffee, Pour Your He...Howard Schultz, CEO Starbucks Coffee, Pour Your Heart Into It<br />Care more than others think wise.<br />Risk more than others think safe.<br />Dream more than others think practical.<br />Expect more than others think possible.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1403927290529132193.post-36551920189608003492010-01-09T00:27:06.039-05:002010-01-09T00:27:06.039-05:00Wow, what a day! Are prayers and thoughts will be...Wow, what a day! Are prayers and thoughts will be with you the whole way. Thanks for the update and educating us all on this disease! We know first hand how a team of Doctors can become instant family forever!Johnson Familyhttps://www.blogger.com/profile/00006798457791241717noreply@blogger.comtag:blogger.com,1999:blog-1403927290529132193.post-75094858054358192912010-01-08T22:55:39.362-05:002010-01-08T22:55:39.362-05:00CHOP is an unbelievable place with unbelievable te...CHOP is an unbelievable place with unbelievable teams of doctors, nurses, etc. There is no better hospital... trust me... I know first hand! Sounds like there's a plan in place, so hold on tight as your ride begins:) I am here to help you through the ride no matter how smooth or bumpy it may be.<br />Linda FarrenLinda Farrennoreply@blogger.comtag:blogger.com,1999:blog-1403927290529132193.post-30361423405991004432010-01-08T16:25:04.496-05:002010-01-08T16:25:04.496-05:00I can just see Maddie talking with the Doc's a...I can just see Maddie talking with the Doc's and all around.... She will teach us all something that is for sure. Get ready world.... Very happy to hear (no doubt) on great support coupled with knowledge, things move in a possitive direction ....never worry on this now. I will leave with this...... No matter what in life we are given it is up to us to make the best of any situation for if you believe in God he will always show us the way..... Love to all cyndee weaverAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-1403927290529132193.post-35974488064465174972010-01-08T09:03:01.569-05:002010-01-08T09:03:01.569-05:00Henri Nouwen:
When we honestly ask ourselves whic...Henri Nouwen: <br />When we honestly ask ourselves which person in our lives means the most us, we often find that it is those who, instead of giving much advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a gentle and tender hand. The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares.<br /><br />We are thinking about you today.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1403927290529132193.post-1334247445483874722010-01-08T08:22:59.282-05:002010-01-08T08:22:59.282-05:00Thanks for the update Matt and Donna. Your positi...Thanks for the update Matt and Donna. Your positive attitude will help get you and your family thru this.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1403927290529132193.post-4283098949772879992010-01-08T02:46:27.841-05:002010-01-08T02:46:27.841-05:00Wow. Big day. XOXWow. Big day. XOXLee Ouldsnoreply@blogger.comtag:blogger.com,1999:blog-1403927290529132193.post-40469569849514133332010-01-08T02:09:42.293-05:002010-01-08T02:09:42.293-05:00Thanks for such a detailed update, Matt and Donna!...Thanks for such a detailed update, Matt and Donna! The only people on her team you forgot to mention are yourselves! I know that Maddie has the parents she needs to support her through this and together with everyone else, Maddie will handle what comes her way! Go Team Maddie!Karen Crowleyhttps://www.blogger.com/profile/06929425219875532887noreply@blogger.comtag:blogger.com,1999:blog-1403927290529132193.post-1537454639476422552010-01-07T22:41:17.326-05:002010-01-07T22:41:17.326-05:00Wow,what a day! Looking forward to seeing you soo...Wow,what a day! Looking forward to seeing you soon Maddie :). Karen SimpsonAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-1403927290529132193.post-48044128677236391612010-01-07T17:46:24.907-05:002010-01-07T17:46:24.907-05:00You can do this Miss Maddie!You can do this Miss Maddie!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1403927290529132193.post-21858918820126514582010-01-07T08:46:38.107-05:002010-01-07T08:46:38.107-05:00No birth certificate is issued when a friendship i...No birth certificate is issued when a friendship is born. There is nothing tangible. There is just a feeling that your life is different and that your capacity to love and care has miraculously been enlarged without any effort on your part. It’s like having a tiny apartment and somebody moves in with you, but instead of becoming cramped and crowded, the space expands, and you discover rooms you never knew you had until your friend moved in with you. --Steve TesichAnonymousnoreply@blogger.com