PAULA KERR
  • Female
  • Ireland
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  • Anna Mossiat
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Non Carrier Mother with 3 sons living with DMD!

Started this discussion. Last reply by PAULA KERR Feb 1, 2014. 4 Replies

Dear Friends,Can anyone help me make sense of this!We have three sons diagnosed with DMD since November 2012 - Our sons are now 8 (duplications 3 -7) and 3 year old identical twins . I have been told…Continue

Help & Advice re starting Steroids

Started this discussion. Last reply by PAULA KERR May 1, 2013. 3 Replies

Hello, I need your help! Our three sons were diagnosed with DMD in November in 2012. We live in Ireland and were told that it is up to us if/when to start our seven year old on steroids. The plan is…Continue

 

PAULA KERR's Page

Latest Activity

Kim Watters left a comment for PAULA KERR
" hi paula    kimmy  here ,  at   the moment   off   fb   don't when  or if  let me   on.   so  have  to   keep touch   here. how are   the   boys."
Sep 22, 2017
PAULA KERR replied to PAULA KERR's discussion Non Carrier Mother with 3 sons living with DMD!
"Dear Regina, Many thanks for taking the time to reply. I was assuming the likely answer is gonadal mosaicism. Someone said it could be from egg or sperm (not that it matters to us). Such a vile disease. We must all keep going and praying. God…"
Feb 1, 2014
Maggie replied to PAULA KERR's discussion Non Carrier Mother with 3 sons living with DMD!
"Sounds like gonadal mosaic. "
Jan 30, 2014
Regina replied to PAULA KERR's discussion Non Carrier Mother with 3 sons living with DMD!
"Paula-- I am so sorry to hear your story.  It is my understanding that if you are not a carrier you likely have a condition called gonadal mosaicism.  It is when you do not carry the mutation genetically but your eggs carry the…"
Jan 29, 2014
PAULA KERR posted a discussion

Non Carrier Mother with 3 sons living with DMD!

Dear Friends,Can anyone help me make sense of this!We have three sons diagnosed with DMD since November 2012 - Our sons are now 8 (duplications 3 -7) and 3 year old identical twins . I have been told I am not a carrier for DMD - I have no family history and in my generation we have 6 boys and me! I h been told my children "are random mutations" - what a phrase! Can anyone explain? Maybe it is not possible to know??Perhaps it is irrelevant for us - I am too terrified to even try and have another…See More
Jan 29, 2014
PAULA KERR replied to PAULA KERR's discussion Help & Advice re starting Steroids
"Sorry Have had IT problems! many thanks Damien & Anna. Lovely of you to respond. Great to see these messages - difficult day as George & Isaac celebrated their third birthday today. Always been a big fan of birthdays but I must say we have…"
May 1, 2013
Donna Moran left a comment for PAULA KERR
"Hi Paula, I read your comments and requests on this site. I live in Co. Kildare  and I have one son with Duchenne. He was diagnosed 2 and half years ago so I am a little further on than you. I remember well those days of shock and not knowing…"
Apr 24, 2013
damien lynch replied to PAULA KERR's discussion Help & Advice re starting Steroids
"Hi Paula,..I sent you a friend request. I would concur with what Anna has said in her reply. If you reply tot he friend request I will private message you with whatever information I have. Best regards, Damien"
Apr 22, 2013
Donna Moran favorited PAULA KERR's discussion Help & Advice re starting Steroids
Apr 22, 2013
Donna Moran favorited PAULA KERR's discussion Help & Advice re starting Steroids
Apr 22, 2013
Anna Mossiat replied to PAULA KERR's discussion Help & Advice re starting Steroids
"Hi there Paula, This sounds awfully familiar to me... I wondered who are you seeing for your boys? When my own was diagnosed I was sent to a certain specialist in CRC in clontarf and after 2 visits I begged my GP to send us somewhere else...All we…"
Apr 22, 2013
PAULA KERR replied to Jonathan's discussion Pamidronate therapy also known as Aredia
"Dear Brian,   I am so very sorry to hear that your son has died. This is such a horrific disease Brian; we had never even heard of it until November. So much work is happening around the world and I just hope and pray that the miracle we all…"
Apr 20, 2013
PAULA KERR posted a discussion

Help & Advice re starting Steroids

Hello, I need your help! Our three sons were diagnosed with DMD in November in 2012. We live in Ireland and were told that it is up to us if/when to start our seven year old on steroids. The plan is to start them next week - however I am concerned as the only thing they are doing as a baseline is to check if he has immunity to chickenpox. There has been no mention of bone scans or  other blood tests and we were told the use of 'supplements' will be up to us! I understand that Vit D and…See More
Apr 19, 2013
PAULA KERR replied to Jonathan's discussion Pamidronate therapy also known as Aredia
"Hello,  I am sorry I am not able to add to the conversation or offer help....instead I need your help! Our three sons were diagnosed with DMD in November in 2012. We live in Ireland and were told that it is up to us if/when to start our seven…"
Apr 19, 2013
PAULA KERR commented on PPMD's group Duplications
"Hello! We have three boys with duplication of exons 3 -7. Only diagnosed in November 2012......still struggling to put one foot in front of the other. Never fail to be overwhelmed by the kindness of strangers.......especially some of the…"
Feb 12, 2013
PAULA KERR joined PPMD's group
Feb 12, 2013

Profile Information

Name(s) of child(ren)/individual(s) with Duchenne:
PAULA KERR
Age(s) of child(ren)/individual(s) with Duchenne:
0-3, 4-6, 7-12
City:
ROSCOMMON
State:
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Comment Wall (4 comments)

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At 4:11pm on September 22, 2017, Kim Watters said…

 hi paula    kimmy  here ,  at   the moment   off   fb   don't when  or if  let me   on.   so  have  to   keep touch   here. how are   the   boys.

At 11:28am on April 24, 2013, Donna Moran said…

Hi Paula,

I read your comments and requests on this site. I live in Co. Kildare  and I have one son with Duchenne. He was diagnosed 2 and half years ago so I am a little further on than you. I remember well those days of shock and not knowing what to do next . Please e mail me on decdon98@eircom.net . I will give you my home number so I will talk to you and help you if  I can .  Regards

Donna moran

At 7:54am on February 4, 2013, Alina Popovici said…

Thank you so much ,Paula,it means a lot for me your words,i wish you to fight for your kids,because i beleave that God will do a miracle,we need all of us.take care of you ..thank u that you are a my friend now.God bless our sons,and let`s fight together.i wish a good day for now and thanks one more time

At 11:16pm on February 3, 2013, Harriet Meermann said…

My thoughts are with you daily. My grandson has duplications 5-7. I will be in Washington DC Feb. 10 to 12 lobbying for funding for research and for the FDA to speed up clinical trials and treatments for rare diseases such as duchenne. My grandson is 6 years old. Your boys are beautiful. I was in Ireland 5 years ago in Galway and Rosmuc, where my family came from. Our family is involved in fundraising for research for duchenne. We are here to help you in anyway we can. Harriet Nee-Meermann Miami Florida.

 
 
 

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