I am most commonly known as "Robert's Mom" or "Jack's Mom"! I take care of two very active boys, a husband and a home.
In my free time I fundraise, advocate, educate and learn about DMD. I love to help other families in any way that I can. My favorite project is backpacks for newly diagnosed families at Children's Hospital in Denver (the idea of Dr. Susan Apkon). Darrell and I fill backpacks with lots of information about DMD & other resources for parents and toys & books for the kids.
About my family:
We all love to be outside and enjoy beautiful Colorado and all it has to offer.
My husband Darrell loves to play with his boys. He also loves to play softball with the big boys! Let's not forget snowmobiling in the winter!
Robert is our athlete and plays competative soccer, swims, golfs, etc., etc., etc. He is also a excellent student and great big brother
Jack is "The Man" - he is loads of fun, always smiling and loves hangin' out with his friends. He loves Legos, water, being outside, Shamu and monster trucks.
Amber is the newest member of our family. Jack got Amber from Canine Assistants in September 2008. She has given Jack such confidence and Joy!
We have an amazing extended family, made up of family and friends who support us in the most amazing ways. We could not do all we do without them!!
Name(s) of child(ren)/individual(s) with Duchenne:
Hi Angela...just checking out your page and noticed some pictures with an incline and some type of chair that Jack uses in school. Is that something that you made or can you find things like that online? My son Gabe just started kindergarten and I'm trying to figure out what all he needs in the classroom. I think he has a stool for under his feet when he sits at his desk, but that's it. Do you use the incline at home to stretch him?
No, I haven't seen any info about it (I *have* been sporadically checking up on the mailing list and on here) -- but I think we may not have been able to make it, anyway. Thanks for remembering us, & we may be trying our own event next year.
Hi Angela, I haven't spoken to you in a while. Hope things are well. I have now gotten my CNA certificate to be home more with Shawn. We are now working on getting Shawn his own dog through CCI. One more step to go to see if we are excepted into the CCI program. We will have to go to Oceanside, CA for 2 weeks if we make it. Kylie has her drivers permit now. Just thinking of you, Sonia
Happy Mother's Day too! Thank you for the comments. The boys just LOVED having their photos taken. I think we can work out Friday evening. I'll confer with the assistant scheduler and get back to you. Take care, Liisa
I apologize for being slow slow to respond to your well wishes, but I have been totally overwhelmed of late and trying to recover/adjust. Eric and I just returned from Cincinnati and visit with Doctor Wong. I will be trying to keep up with PPMD more now that HUGE initial push is through and onto continuing battle.
Hi Angela - I met you a few years ago at conference. I periodically check in with your family and Jack's website. I see that Jack has a service dog. Alex is 9 and still gets around pretty well. I am wondering if I should consider getting him one. I heard it can take a long time. Just curious on what helped your family make the decision to get the dog now and what does Amber help Jack with? Does he attend school with him? If you have this info posted somewhere, let me know and I will read.
Thanks and hope to see you again soon. All the best.
I love Jack's CaringBridge site. Please tell him I hope his arm feels better soon! I absolutely cannot wait to see you and your family - including Amber! I can tell she and Jack are the best of friends! I am helping coordinate all the RFOS marathon efforts. So, I am happy to help you guys in anyway. Just let me know! Have a great weekend!
hi Angela! Karen's cousin moved out there about 17 miles from you! We want to come and visit some day (with skis of course). How is Jack doing? Since we changed my Jack's prednisone to 10 days off 10 days on he's been losing strength it seems. Seems like next year might be a big year for developements in treatments!!! See ya, Brian