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Kari 56, Female Burbank, CA United States: Favorite

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Coach to Cure MD

26 members
20 Comments 0 Favorites
Duchenne Smiles

114 members
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Run for Our Sons

64 members
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Mom's Cafe

123 members
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Digital for Duchenne

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Kari's Discussions

Chest Pain

Started this discussion. Last reply by carrie Feb 22, 2010. 12 Replies 0 Favorites

Parents,How do you handle when your son tells you he has chest pain? I remained calm but Jared would not talk about it. It lasted for an hour and that was it. I did not take him to the Dr. since I…Continue

Tags: pain, chest

IEP Help for Jared

Started this discussion. Last reply by Laurie Barton Feb 6, 2009. 18 Replies 0 Favorites

I am sure this has been discussed before and I am sorry that I could not look over discussions enough to find an answer. After we returned from seeing Dr. Wong in November, I let the teacher know we…Continue

Tags: pe, adaptive, iep

Running, Walking, PE and looking very normal

Started this discussion. Last reply by Joshua's mom Jan 7, 2009. 36 Replies 0 Favorites

I am still so thankful that Jared is still so ambulatory. We are truly blessed by this fact and so I really cannot complain. I have been so torn about what we were recently told in Cincinnati and…Continue

Tags: very, normal, looking, PE, walking

Help with Clothes and Shoes

Started this discussion. Last reply by cindy curr Jul 28, 2009. 21 Replies 0 Favorites

We are constantly having a battle with getting to church or school on time since Jared constantly hates his shoes and jeans. He likes them in the beginning and then hates them within a few days. Some…Continue

Tags: shoes, jeans

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Keep Jared Jumping!

Profile Information

About me:: I love christian music, I love scrapbooking (I have been a Creative Memories Consultant since October 1997), I love people, I love my family and friends, and I love JESUS. I keep extremely busy with working four bookkeeping jobs at home and being a Creative Memories Consultant. I volunteer with MDA all the time as I know by raising more money, we can get closer to finding the cure for our boys and girls, and others who have DMD/BMD. God is the true Physician. "Yet those who wait for the Lord will gain new strength; They will mount up with wings like eagles, They will run and not get tired, They will walk and not become weary". Isaiah 40:31 - God is my strength and my hope is in Him. Do you know of the loving, saving grace of Jesus? If not, I would encourage you to contact me for the message of the gospel. Don't wait. Tomorrow may be too late.

About my family:: I love spending time with my husband Stephen and only son Jared whom I adore.

Name(s) of child(ren)/individual(s) with Duchenne:: Jared (Becker MD)

Age(s) of child(ren)/individual(s) with Duchenne:: 7-12

City:: Burbank, CA

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Comment Wall (123 comments)

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At 1:59pm on January 13, 2011, Penny Hauer said…: Hello Kari I wish I could call you as friends often do today was so hard Caleb is 10 still walking happy until now he wears afos that happened over christmas. everyone is always telling he how well he is doing cause he walks however everythingelse is falling apart. sinus very serious can not cure it because of having an allergy to everything. so he has shots in each arms twice a week. back to today had three weeks off mon he had a headake and next day his tummy hurt. tommorow you go ok ok Mom I will got him dressed but he wanted to sit on the bed and rest ok Caleb its time to go no no mom I just cant I cant which became stronger and louder. not a person will know about the afos not one unless you tell them. his eyes were wild I cant I cant I walked him to the bus he turned around and told me that he never wanted to hold my hand again that is what he does to go to sleep and when he is scared. ok I said we walked beside the bus and prayed he looked at me and said that God is not helping or he would not let this happen. I have prayed a morning and I got on the ppmd site and up came your site so what to do I feel so helpless I know that GOD is there and I know He helps but who has the understanding of a 10 year old.If you want to give me your # I would just love to talk to someone who knows and has a great relansionship with our Father. I hope you read your site today want to hear from you. Penny

At 11:37am on October 9, 2009, Renee Carlson said…: HI Kari, I saw your note about non-profit vs. trust and would love to chat w/ you more about that. My nephew, Zach (12 yrs old with Duchenne MD) lives with us and I am in the process of setting up something for him, but there is SO much info out there and I'm overwhelmed!! Shoot me a note when you can. Thanks!

At 5:27pm on September 22, 2009, Amy Sienkiewicz said…: Hi Kari- I am a Creative Memories Consultant too. My son has DMD. I saw your digital group you started...that's cool. Hope to keep in touch with you.
Amy

At 2:03am on September 1, 2009, Kim Maddux said…: Hi Kari - I saw your message about attend the Run for our Sons 1/2 marathon on Sunday. Me and my family will be there. My husband is running, as well as some good friends of ours from Eugene, OR. My mom and sister are flying in from Texas. Our son, Alex is almost 10 and has DMD. We also have 3 yr old twins. We will look for you. Your son is so adorable. I love scrapbooking too. Take care.

At 8:05am on August 31, 2009, Kimberly Hannan said…: Yes, you must keep the faith! But what I say for you now is since he is so young and probably not so symptomatic....just dwell on him and forget the Duchenne as much as you can. I used to forget Johnner was "sick" and wondered if I was crazy. He is going to have a hard road....but he will have a great life. That is what I said about our son---and he did. I am writing a book about his life and I am going to name it "I Didn't Say It Was Easy." It isn't easy but the GOOD will far outweigh whatever down sides you have. I can sit here and think of a zillion moments Johnner made me laugh so hard I cried, made my heart sing, etc....and I have started to put the surgeries, BiPap part, the drug study, stays in the pediatric intensive care, etc. things on the back burner. Yes, they were part of his world but only a blink of it. I hope all goes well with you and your little guy. Remember I am here to chat with whenever you want to. My thoughts will stay with you. You have found a great place for support here. My son was diagnosed in the early 90s and these things did not exist.....this site is a blessing. Kim

At 6:38pm on February 16, 2009, Gregory said…: Please join our San Francisco Bay Area Families group.

Greg

At 3:26am on February 4, 2009, Julie Gilmore said…: Hi Kari,
I have started a new group for families with children that experience tactile sensitivities / sensory integration dysfunction.

As you were instrumental on opening up this area of discussion in December, I'm really hoping you join so we can all share tips and ideas.

I think it goes without saying that life with DMD is hard enough, but life with DMD and SID can be pretty unbearable at times......

Talk to you soon,

Jules

At 8:29pm on January 28, 2009, Cathie Bullis said…: Hi Kari,
Thank you for your email response. Coincidentally, I just had my 2nd Echocardiogram with a new Cardiologist and was much more satisfied with the results. It also was a much easier exam then the one I had two years ago. I was very happy to hear him say that my heart is fine. I have always heard in the past "false positive", or "we can do a oblation for my very well controlled occasional tachycardia". He cleared me for another two years.

I need to be well so that I devote more time to getting money raised for MD.

By the way, Michael has his IEP at school just this year and it's working out very well so far.

Your Jared is precious in his photos. I pray for all these children.

At 1:35am on January 22, 2009, Ana Vaish said…: Hi Kari,

Thanks....I look forward to meeting up with you.

Ana

At 5:34pm on January 21, 2009, christine good said…: Kari,
Have you tried charter school. Free, public and small. Law requires them to uphold IEP's with PT/OT.

Christine