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Sherri Looper
  • Female
  • Anderson, CA
  • United States
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Sherri Looper's Friends

  • Kate
  • Ann Martin
  • Andrea Cleary
  • Leeandra Arhdeacon
  • Jacqueline M McConnell
  • Deb Robins
  • Pat Furlong
  • Stephanie Matthes
 

Sherri Looper's Page

Latest Activity

Sherri Looper commented on PPMD's group Duplications
"Hi Char. I don't have a son but an 11 year old daughter with duplications 8-17. Mobile, but trips and falls a lot, uses a stroller for long distances, is slower and weaker than her peers."
Oct 20, 2014
Jacqueline M McConnell left a comment for Sherri Looper
"Sherri.  50/50 is good news.   Alice's was 100/0- this is why they are treating her as if she has duchenne.  The down side is, without the diagnosis of manifesting carrier she may not be able to be an client of MDA and go to…"
Aug 21, 2013
Kate left a comment for Sherri Looper
"Hi sherri - my daughter Libby, has just turned 8 years old. She does have some slight muscle weakess but she's not been offered any form of physio as yet. The specialist has said that Libby as the learning ability of a boy with DMD and I have…"
Aug 7, 2013
Kate left a comment for Sherri Looper
"Hi sherri - nice to meet you! In the UK very little seems to be known/researched about DMD so iit will be great to pick the brains of our friends from across the pond!!! There is no MD in mine or my husbands family trees so all this has come as a…"
Jul 19, 2013
Deb Robins left a comment for Sherri Looper
"Hi Sherri, I was hoping you would send a photo of your girls STAT because we have decided at the last minute to dedicate the last week in February to Girls with DMD, 28th being rare disease day. 1 in 50 million females has DMD. I just got some…"
Feb 23, 2013
Sherri Looper replied to Dalibor Randjelovic's discussion duplicaton of exon 8-13 (out-of-frame) in the group Duplications
"Hi Dalibor! Yes, my daughter definitly shows DMD symptoms. She has a diagnosis of Hereditary Progressive Muscular Dystrophy, Probable Duchenne. Because she is third generation DMD. We are with MDA in Sacramento, Ca. We are now waiting on the results…"
Sep 20, 2012
Leeandra Arhdeacon left a comment for Sherri Looper
"Hi Sherri! I am hoping you get an email invite, but just incase, The F.A.C.E.S group will be meeting at the Shrinners in Sacramento Across the street from Davis medical center Saturday October 13th from 1-4. Would love to meet you and your family.…"
Sep 19, 2012

Staff
Ann Martin left a comment for Sherri Looper
"Hi Sherri, Thanks for your question.  Yes, I do review DNA analysis reports that are submitted for the registry and I would be happy to look at your daughter's.  Please consider registering her on DuchenneConnect…"
Sep 17, 2012
Sherri Looper replied to Dalibor Randjelovic's discussion duplicaton of exon 8-13 (out-of-frame) in the group Duplications
"Hi Dalibor. My daughter has duplication of exxon 8-17. She has always tripped and fallen since she started walking. She is now 91/2, walking good, (she has inserts, which have really helped her tripping and falling) uses Convaid Cruiser for…"
Sep 17, 2012
Sherri Looper joined PPMD's group
Sep 17, 2012
Sherri Looper commented on Holly Cahoon's group Dr. Kevin Flanigan - University Research Center, Utah
"Hi, we don't see Dr. Flanigan in person, but my daughter is in the United Dystrophinopathy Project. Nationwide Childrens Hospital & Dr Flanigan are the ones who did her DNA analysis which showed duplication of exxon 8-17. Is…"
Sep 17, 2012
Sherri Looper joined Holly Cahoon's group
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Dr. Kevin Flanigan - University Research Center, Utah

For all of you who see Dr. Flanigan as well.
Sep 17, 2012
Sherri Looper replied to Jennipher Poffenberger's discussion Confused
"Hi Jennifer, I am so sorry to hear about your son's diagnosis. How old is your son? He sounds likes he's really smart. Sometimes they handle things or information better than we do. And who knows when he may enter a wheel chair, they are…"
Sep 14, 2012
Sherri Looper joined MicahsDaddy's group
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California Families

This group is for families living in CA.
Sep 9, 2012
Sherri Looper commented on Ally Bridwell's group Girls with DMD
"Hello Everyone, I have a daughter, Kaitlyn, who is 9, diagnosed DMD. She is 3rd generation. All the rest were boys. I also had the same problems getting her CK done. They said no way, your worrying too much, girls don't get it. Which I…"
Sep 9, 2012
Sherri Looper joined Ally Bridwell's group
Sep 8, 2012

Profile Information

About me:
I had 2 brothers and a maternal uncle (of course) with DMD. I miss them all terribly!
About my family:
I had three girls and didn't even worry about DMD. They were girls, right? Wrong! My 10 year old was just diagnosed Hereditary Progessive MD, probable Duchenne, about 2 years ago, and my 5 year old just diagnosed.
Name(s) of child(ren)/individual(s) with Duchenne:
Kaitlyn and Jade
Age(s) of child(ren)/individual(s) with Duchenne:
4-6, 7-12
City:
Anderson

Comment Wall (9 comments)

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At 3:30pm on August 21, 2013, Jacqueline M McConnell said…

Sherri.  50/50 is good news.   Alice's was 100/0- this is why they are treating her as if she has duchenne.  The down side is, without the diagnosis of manifesting carrier she may not be able to be an client of MDA and go to the clinic  The diagnosis also paves the way for Medicaid and special designations (vary by state) that could help fund orthotic braces and cardiology visits which I would urge you to have for both.  With a 50/50 you may want to avoid the steroid thing altogether - this is all the doctor can really do treatment-wise, and it doesn't sound like he wants to do any kind of treatment.  Steroids have terrible side effects and we always wonder if Alice really needs them.  We are going to take her down to Shriners in Portland and see what those docs say.  Does your ortho want her to wear night braces to help with the tightening?  Is there a hospital nearby that does duchenne research?  Our docs didn't know what to do either.  That was why we took them to Childrens' in Philadelphia.  They'be been running the show ever since.  They're the ones that wrote the Rx for the steroids, for example.  Our neurologist did make the diagnosis, however. 

At 8:31am on August 7, 2013, Kate said…
Hi sherri - my daughter Libby, has just turned 8 years old. She does have some slight muscle weakess but she's not been offered any form of physio as yet. The specialist has said that Libby as the learning ability of a boy with DMD and I have had to fight with the school to get her extra help at school, but now that we have a diagnosis they have stopped treating me like a neurotic mother and started getting their bums in gear!!! It's been such a struggle though.
We took Libby to Florida last year and bought a mountain buggy stoller to push her round. Although she's only 8 years, she is wearing age 11-12year clothes so not sure how long this stroller will last!!
Can I ask, are any of your daughters registered as disabled? Look onward to hearing from you and keeping in touch xxx
At 2:21am on July 19, 2013, Kate said…
Hi sherri - nice to meet you! In the UK very little seems to be known/researched about DMD so iit will be great to pick the brains of our friends from across the pond!!!
There is no MD in mine or my husbands family trees so all this has come as a bit of a shock to me and my family. Libby is my only child. I knew there was something not quite right with Libby but was fobbed off by her school as being a neurotic mother - it was awful. I had so little knowledge about MD that when they started talking about the possibility it could be DMD I had to google it and I was so upset. Were sort of a year down the line and I'm still a bit confused with prognosis and how this will affect Libby going forward.
I know what you mean when you say that with 3 girls, DMD didn't even cross your mind - I always thought it was a boys disease. What symptoms does your oldest girl show and have they got worse? Kate x
At 8:50pm on February 23, 2013, Deb Robins said…
Hi Sherri, I was hoping you would send a photo of your girls STAT because we have decided at the last minute to dedicate the last week in February to Girls with DMD, 28th being rare disease day. 1 in 50 million females has DMD. I just got some slides up on our homepage from three women who gave us their photos (2 in Australia) but I can add Kaitlyn's in the article that hyperlinks from the slides. http://www.duchennefoundation.org.au thanks...my email is deborah.robins@duchennefoundation.org.au
At 12:51pm on September 19, 2012, Leeandra Arhdeacon said…

Hi Sherri! I am hoping you get an email invite, but just incase, The F.A.C.E.S group will be meeting at the Shrinners in Sacramento Across the street from Davis medical center Saturday October 13th from 1-4. Would love to meet you and your family. :0) My email address is leeandraarchdeacon@yahoo.com  To RSVP contact Julie Garcia or Christina Adamson.

At 11:37am on September 17, 2012,
Staff
Ann Martin
said…

Hi Sherri,

Thanks for your question.  Yes, I do review DNA analysis reports that are submitted for the registry and I would be happy to look at your daughter's.  Please consider registering her on DuchenneConnect (www.duchenneconnect.org).  DuchenneConnect is an international registry for both Duchenne and Becker patients, both male and female. The purpose of the registry is to connect patients with actively recruiting clinical trials, to educate patients and families about Duchenne and Becker research, and to advance research by providing a large dataset of Duchenne and Becker patients.

If you decide to join the registry, you can complete a Profile for your daughter and upload the report into her account, or you can email (ann@parentprojectmd.org) or fax
(404-935-0636) the report to me.  I am happy to review the report and answer any questions you may have even if you decide not to register her on DuchenneConnect.

Please let me know if you have any other questions or concerns.

Best,

Ann

Ann Martin, MS, CGC, Certified Genetic Counselor at PPMD and DuchenneConnect Coordinator

 

At 8:18am on September 15, 2012, Andrea Cleary said…

Ok, well your privacy settings don't let me leave a message since we are not "friends" yet.

About 30% of the time there is no family history, as it is a new mutation. For example, I am a carrier, but there is no family history, and my mother is not a carrier, therefore the DMD started in me. My point is just that a BMD mutation could have began in the girl's father without any previous family history.

I just asked because, as you are aware of the X-inheritance of DMD, your girls must either have X inactivation or are getting another damaged X from their Dad. Sometimes men with BMD are only mildly affected and diagnosed rather late. The genetic counselor and tests will sort it out, and hopefully quickly. 

We had just been discussing the genetics of DMD and the possible outcomes with Simon because he was asking if his children would have DMD too.

Keep on keeping on,

Andrea

At 8:05am on September 15, 2012, Andrea Cleary said…

Hi Sherri,

Comments stay visible on our "walls", but if you want to say something privately or not for others eyes, then do a "message". Perhaps my privacy settings won't allow you to message me unless your are a friend, so I will be-friend you after I am finished this. It will show that you have something in your "in box" up on the right hand side under your name. 

Andrea

At 11:36pm on September 9, 2012, Leeandra Arhdeacon said…

Hi Sherri, the F.A.C.E.S group does meet at Shriners. Not sure of the next meeting, but would love for you to come! I am so sorry for your daughters diagnosis. We are all here to support. We are also on Facebook, if you would life to join a few discussions on there as well. lots of hugs to you and your family.

 
 
 

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