Happy New Year to all our friends in the MTM community, hope this message finds you all well. It has been a very good year for us, and we are thankful that...
3948
Wendy
hughesdewy
Jan 2, 2007 9:47 am
Hi Moz, Rachel and boys. Firstly happy birthday to Marconi!! I'm so pleased to hear that its going well for you and that you were able to celebrate this new...
3949
kr.sandjenta
Jan 2, 2007 11:16 pm
wish you all a happy new year. i just found this site now.. and i think its gonna be a great beginning of a new year to have contact with others in the same...
3950
Rebekkah
rebocker
Jan 2, 2007 11:18 pm
Hi my name is Rebekkah. I have a 5 year old son and nephew that both have x-linked myotubular myopathy. I am so excited to find others that are going through...
3951
Wendy
hughesdewy
Jan 3, 2007 9:18 am
Welcome Rebekkah and Mai-Lis (and I'm so glad to be in contact again mai-lis)! This website is really helpful. Please do ask absolutely anything as someone...
3952
Scott & Betsy Grant
scottandbets
Jan 3, 2007 4:16 pm
Dear mai-lis and markus, Welcome! tell me more about your son and how he is doing. I have a son who is 10 years old, he started out very weak and couldn't...
3953
Abbie Howeth
abbiesharrison
Jan 4, 2007 12:03 am
I know it has been a while but I just thought I would update everyone and let all know that Kaylee is doing much better. She has recovered well from her trach...
3954
Scott & Betsy Grant
scottandbets
Jan 4, 2007 2:04 pm
that's wonderful news, Abbie!! Please let us know how everything's going. Betsy...
3955
Shannon
smashintwo66
Jan 9, 2007 5:03 am
Hi everyone, If you haven't already stopped by Javad's Place (www.javadsplace.org) I want to ask you a question. We would like to put links to the kids (or...
3956
Wendy
hughesdewy
Jan 9, 2007 7:52 am
Great job Shannon!! We would love to put Zak's picture on there! Well done and Good luck with everything this year! Wendy, Simon, Sophie and Zak x (UK) ... ...
3957
Karen Vardy
bty191983
Jan 9, 2007 4:23 pm
-hello, i have just seen your response to the newspaper article about my son Jack. As usual the press have misunderstood. Jack doesn't stay at the hospice we...
3958
Spampinato, Rosemary
spampinato15216
Jan 9, 2007 5:00 pm
I'm assured and I hope you don't take offense to my concern. I understand hospice in the UK is different than the US. Here, it is a place to prepare for death....
3959
Karen Vardy
bty191983
Jan 9, 2007 5:05 pm
Hello, An update to our introduction posted last month. You know when you just wish you hadn't tempted fate? Two days after posting our first message we were...
3960
talkpod@...
scootergurl86
Jan 9, 2007 5:21 pm
hello Karen and Dave and Jack, i do not know what you mean by ventilator as i dont know if its the same in the UK as it is here in the USA, but i have a...
3961
Spampinato, Rosemary
spampinato15216
Jan 9, 2007 5:25 pm
Karen, my heart has slowed for your family. I'm praying for recovery, a clear airway and peace among you. Please God help this beautiful boy and his family...
3962
alex muendel
alexmuendel
Jan 9, 2007 5:27 pm
Karen, My deepest love and peace to you and yours through this experience. I, along with my partner and oldest son went through a similar experience a year...
3963
alex muendel
alexmuendel
Jan 9, 2007 5:32 pm
...or email me your phone number and I'll call you. Alex __________________________________________________ Do You Yahoo!? Tired of spam? Yahoo! Mail has the...
3964
wendyhughes@...
hughesdewy
Jan 9, 2007 5:51 pm
Hello Karen, I'm so so sorry to hear this: what a horrendous time you seem to have had. No, Zak hasn't been in this situation where he's been faced with the ...
3965
Scott & Betsy Grant
scottandbets
Jan 9, 2007 8:26 pm
Dear Karen, I'm so sorry to hear that you've had such a rough time with Jack. I know it can be extremely trying to see your child so ill and weak. I wanted to...
3966
kristin cypher
myrkrida
Jan 9, 2007 9:25 pm
Karen & Family: I am so sorry you are going through such a difficult time, our thoughts are with all of you, but especially Jack. We are really thinking good...
3967
Shannon
smashintwo66
Jan 10, 2007 5:24 am
Dear Karen and family, I wanted to offer some support (as did others) regarding your son, Jack. I understand how difficult things can be. Javad (age 5) was...
3968
Darlene
dm4462
Jan 11, 2007 10:33 pm
-Hi Karen and Jack, My two of my grandsons have MTMXL. Kyle is 5 years old and Connor is 15 months old. When Kyle was a little of 2 years old his right lung...
3969
SIMONE
zacantsim70
Jan 11, 2007 11:05 pm
Karen I wish you all the best and hope that Jack is improving. I watched my 5 year old son pass away from MTM and be on tender hooks for 3 months so I really...
3970
³Í¤å
sector.kevin
Jan 11, 2007 11:41 pm
Hi everyone in this resourceful group. Thank you everybody who shared many useful information in this forum. I visit here sometimes since a few months ago but...
3971
Phyllis Jenkins
iltq2
Jan 11, 2007 11:43 pm
Hi, My name is Phyllis, and I am a 50 year old female born with myotubular myopathy. Late in the summer I started experiencing a lot of pain in my back, and...
3972
alex muendel
alexmuendel
Jan 11, 2007 11:53 pm
Simone, I don't believe that an aneurysm is a result of MTM. An aneurysm is a bulge in a blood vessel, much like a bulge on an over-inflated inner tube....
3973
Darlene
dm4462
Jan 11, 2007 11:56 pm
Hi everyone, Sorry, I haven't been around lately. For some reason I have been bouncing. Anyway, things have still been crazy around here. Kyle and Connor are...
3974
Amanda Hollingsworth
adhollingswo...
Jan 12, 2007 1:49 am
Hi Simone, I would definitely be concerned about the aneurysm. They can be pretty serious. My son had a minor cardiac event after one of his eye surgeries. He...
3975
kristin cypher
myrkrida
Jan 12, 2007 2:53 am
Hi Amanda: Sebi will potentially be having eye surgery this summer (he is also going to have his g-tube removed! Yeah!!), and your comment about cardiac...
3976
Wendy
hughesdewy
Jan 12, 2007 7:17 am
Hi Kevin Thank you for sharing your story and welcome to the group – we are very pleased that you have made yourself known. The blog is great - what an ...
