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About my family:: We live in SoCal, Alexander has 1 brother, younger, who is not DMD. I am a housewife , love cooking, gardening, interior design, art museums and my sons more than anything. My amazing husband is Paul and he has another page.

Name(s) of child(ren)/individual(s) with Duchenne:: Alexander

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

City:: riverside, ca

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Traveling by air- BEWARE

Posted on September 15, 2009 at 1:44pm 9 Comments 0 Favorites

In this day and age it's difficult to imagine how or why handicapped discrimination can occur with regard to using a travel scooter and traveling by air. However, last night my little family of four were DENIED ACCESS by Air France at LAX, simply because they didn't know what to do with our little travel scooter, or didn't like it. They did say if we would like to come back tomorrow to try again - they MIGHT change something!! Huh?

Our tickets were non-refundable and purchased in… Continue

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At 4:30am on February 13, 2013, Debbie Schneider said…: Hi Cheryl, just sent you an invite to be my friend but forgot to add a comment to introduce myself. Just saw a comment from 2010 about your son being diagnosed at age 8, our boy Dylan the same, and we are now contemplating using Deflazacort, as took awhile to be convinced, but now seeing the decline and are thinking very hard about it. Just wondered how your boy is doing, and how long he has/was been on steroids for. We are from Auckland, New Zealand, and only now feeling up to making contacts after 18 months of rollercoaster hell after diagnosis. Would love to chat if you are up for it. Kind regards Debbie Schneider

At 3:16pm on December 22, 2010, Ofelia Marin said…: Cheryl, I know what you mean...I am always on the verge myself. it's quite strange, some days I feel kind of hopeless, some I feel really confident that things will turn out for the better. Looking at all these new clinical trials I feel ok these days (mostly). There are 2-3 FDA approved trials going on now and at least one more to start soon. In addition to all others. Next year should be better than this one! I plan to have a DMD free end of the year. :)

Happy Holidays to you too Cheryl, Paul, Max and Alexander!

At 2:38pm on December 22, 2010, Ofelia Marin said…: Cheryl, just saw your answer...I did not want to stress you out!!! Just wanted to put Dr. Kole's answer into perspective since the scientists live in a slightly different world than us. Just wanted to say that, sure, in theory, exon skipping will be great but we need to see it coming to fruition, actually applied and working in our sons (not mice) soon. We cannot wait decades for them to prove it successful. :( He gave the example of PPMOs working in dKO and that is really great but we need to see trials with PPMOs in boys, we want them approved for treating boys, helping THEM maintain function.

However, I still believe that the future will be better for our sons, there are many other drugs/treatments in or entering clinical trials. I am looking at these FDA approved medications and hoping they will not take 3+ years to get to our boys, also ACE-031, Idebenone. The future HAS to be BETTER!

At 11:17pm on January 9, 2010, Tina said…: Cheryl,
Us too. We need 45.

At 11:07am on October 15, 2009, carrie said…: HI Cheryl,

We do live pretty close. Pat Furlong has told me about you (all good). Our son Dylan is now 8 and doing well. we also have a 16yr old unaffected son. We are working to improve the clinical situation at UCLA, which may be of interest to you. We are looking to create a true multi-disciplinary care and clinical trial center, hoping to recruit a new director. WHere do you currently get your care? How is you son doing. Dylan now rides a scotter intermittently for long distance and has trouble with large flights of stairs (still can do). All in all, he is doing relatively well. Thanks for the friend request
Carrie