"Hi Cheryl...
"In Frame" generally means that the missing exon(s) don't interrupt the reading frame which generally they will produce some dystrophin. This is basically what exon skipping does, skips another exon which will then…"
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Andrew Kerr
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Andrew Kerr's Discussions
Ready for Kindergarden?
Started this discussion. Last reply by Andrew Kerr Jun 22, 2010. 4 Replies 0 Favorites
Our son Hayden is just finishing up his first year of school. The teachers and aids, whom we really like, have suggested we may want to consider keeping him in pre-K for one more year because of…Continue
Stroller or Wheelchair
Started this discussion. Last reply by Shelley Mar 29, 2010. 11 Replies 0 Favorites
Both of our boys, Hayden (4.5) and Cameron (1.5) have DMD. Hayden has already plateaued and we believe is starting to lose strength. We're scheduled to meet with the Neurologist in mid May and plan…Continue
Andrew Kerr's Page
Latest Activity
Andrew Kerr replied to Tammy's discussion Deletion of Exon 45 (Out of Frame) in the group Deletions"No supplements, just Deflazacort for the two oldest. Hayden has been on Deflazacort for about 2 years now, and Cameron will likely start next year. He's only 3 now, so a bit young to be swallowing pills. I think just the older…"
Andrew Kerr replied to Tammy's discussion Deletion of Exon 45 (Out of Frame) in the group Deletions"I have 2 sons and 2 nephews with a deletion of exon 45.
The oldest of the four is 10 or 11 now, and is still ambulant. Goes up and down stairs with minor struggles, and walk about a block before getting tired. "
Andrew Kerr replied to David's discussion Exon skipping and young men with DMD"While older boys may not see improvements when put on exon-skipping treatment, I would think we'd see the rate at which they are losing muscle decline, or even stop."
Andrew Kerr commented on PPMD's group Deletions"Hi Jessica,
My sons have a deletion of 45 as well, and yes, skipping exon 44 is what we're waiting for. Have a look at the diagram here:
http://www.actionduchenne.org/duchennepedia/article/15/exon-skipping
See how each exon sort of…"
Andrew Kerr replied to Claire Diemler's discussion How did you talk to your son about DMD?"Hi Claire,
Hayden is about 6.5 and so far we just tell him that his muscles are different than other kids. We do encourage him to ride in the wagon when we go for walks. He often insists on walking for a while, but when we notice him…"
Andrew Kerr replied to Angie Evans's discussion Who pays for your deflazacort? in the group Canadian Families"I'd talk to your provincial Minister of Health. I started there and with our local MLA. They directed me to the right group in the province and it took about 18 months, but Deflazacort is covered by provincial healthcare here in SK…"
Andrew Kerr commented on PPMD's group Deletions"Hi Christina,
There are trials going on now for skipping exon 51, which would bring your son back into frame (make partially functional dystrophin). "
Andrew Kerr commented on Geraldine Coolidge's blog post Just Diagnosed"Hi Geraldine,
We haven't had that problem with Hayden or Cameron, so I'm not sure what help we can be. Realistically, if our nephew wasn't several years older (he'll be 10 next month), we probably wouldn't even have…"
Andrew Kerr commented on Geraldine Coolidge's blog post Just Diagnosed"Hi Geraldine,
Welcome to the site, I'm glad you found it. I'm sorry to hear about the diagnosis. Preston is about the same age as our oldest (Hayden turned 6 in November, 2011). We're quite a ways from you, in…"
Andrew Kerr replied to Angie Evans's discussion PPMD in Canada in the group Canadian Families"Hi Angie,
Yes, I remember chatting with you before.
I agree, it would be nice to have a group in Canada where families could talk more. PPMD does a pretty good job, but its not well known. I think you might have been the one that…"
Angie Evans replied to Andrew Kerr's discussion Deflazacort is now covered in Saskatchewan in the group Canadian Families"Way to go Andrew! Such a great success story. I am writing our Health Minister an email. As I said to you in another thread, if I could just get a way of contacting other families from Ontario I am sure they'd do the same."
Andrew Kerr replied to Angie Evans's discussion PPMD in Canada in the group Canadian Families"I know we've been disappointed with our local chapter of MDCanada. We've attended almost every event they've held, but its quite underwhelming.
We spend more time and effort with Jesse's Journey…"
Joshua's mom replied to Andrew Kerr's discussion Deflazacort is now covered in Saskatchewan in the group Canadian Families"The way we had the vitamins and minerals covered was when they saw results of it being used and having a 6 minute walk test done after each increase with increasing results. Joshua weighs 57 lbs and is only on 12mg of Deflazacort. His…"
Profile Information
- About me:
- Father of two boys with DMD and uncle to two more.
- About my family:
- Happily married to my wife Mandy, and raising our two boys Hayden (5 years old) and Cameron (2 years old).
- Name(s) of child(ren)/individual(s) with Duchenne:
- Hayden and Cameron
- Age(s) of child(ren)/individual(s) with Duchenne:
- 0-3, 4-6
- City and State:
- Weyburn, Saskatchewan
- Country:
- Canada
Andrew Kerr's Blog
Happy Father's Day
Posted on June 19, 2011 at 2:38pm 0 Comments 2 Favorites
Hayden (our oldest) is in Kindergarten and I wasn't too surprised when we gave me a card this morning they made in class. What did surprise me was the poem included in it, and how I couldn't hold back a few tears after reading it. It hit a little too close to home and made me thing about how important it is to slow down once in a while and enjoy the time we have.
Continue"Walk a little slower Daddy,"
said a child so small,
"I'm following in your footsteps…
Canadian Federal Budget 2011
Posted on March 23, 2011 at 3:00am 1 Comment 0 Favorites
Well, it looks like the budget that was proposed today won't go through, and instead we'll go to the polls. The highlights most of the news stations carried did not have a lot of detail, but there were a few things of interest to our community, and one pretty big one.
- This 15-per-cent non-refundable credit on an amount of $2,000 will provide tax relief for caregivers of all types of infirm dependent relatives, including, for the first…
Mobility Reimbursments From Chrysler
Posted on March 9, 2011 at 9:26am 2 Comments 0 Favorites
I just found yesterday, that most of the big car companies have reimbursement programs for some mobility aids on our vehicles. Our boys are still pretty young so we're not looking at wheel chair lifts just yet, but we did pick up a 2010 Grand Caravan a few months ago and had planned on putting running boards on anyways, and now it looks like they'll be covered.
The plan with Chrysler varies a bit from the US to Canada, but here's what I found out this morning. Chrysler will…
Continue RDSP - Not for our boys
Posted on August 23, 2010 at 4:05pm 6 Comments 0 Favorites
While looking for government programs here in Canada for people with disabilities, I happened upon the Registered Disability Savings Plan. It looked great. The government would match from $1000 to $3000 per year for money put into these accounts. There was more money available for low income households as well. We thought this would be a great way to put some money aside for their future needs
I had an appointment with the bank today to find out some more details about the plans. I… Continue
I had an appointment with the bank today to find out some more details about the plans. I… Continue
Comment Wall (3 comments)
- At 2:18pm on March 1, 2011,
Allyson said… - Andrew, I saw your reponse to Sharon's blog today and your story about choosing trees for your yard and the person's comment that they would be great to climb on just hit home for me. I've got an almost 7-year-old son diagnosed a little over 2 years ago. We went shopping for a new car this past weekend and it hit me that in the past we would have just bought what we liked. But now that whole process is tainted by the "can he get in it easily?" question. Anyways, I just found it a little saddening at the time, and your tree story brought it all back how life has been changed, even in little incremental ways. But we are going with the same approach as you are, to concentrate on the things we can control, not to place an undue amount of worry/focus on the things we cannot, and have as much fun as we can in the meantime.
- At 9:24pm on August 3, 2010, Joshua's mom said…
- It was still baseball size 2 hours later!!! It bounced 5 feet in the air and totalled a lot of cars. You were probably quite grateful not to be home. Did you get any damage from it?
- At 1:49am on July 13, 2010, Joshua's mom said…
- Hi Andrew,
On August long we will be going to Kenosee and Carlyle for the weekend. We are actually having KFC from Weyburn delivering Saturday night's supper since the one in White Bear burnt down last week! I know it is approx. an hour away but if you would like to meet that would be great! Our phone number is 204-375-6678.
Take care,
Naomi
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