We were in Denver and it was awsome...lots of very informative info. We are running Seattle and have put a team of 39 runners together. The team is called "team Ross and Finn" on the run for our sons webpage, check it out! We have managed to raise over $45K!! The run is on the 25th, should be fun. Great to here from you! We don't get to the community page as often as we would like, but good to catch up. How are the kids? Hope you all are well! We are trying to get to Baltimore, but its a long way from us and we may not be able to swing it this year. Will let you know if we decide to go. Looks like Colin has offered to buy the beer!! (entry from Colin MaKenzie below) so perhaps we should take him up o that!! Kids are good.
Thanks for commenting on my post. I see you live in West Islip. I lived in Centereach, NY for two years quite some time ago. Where in upstate NY do you go? You have two sons with DMD? I would like to talk to you about how you cope with this and any types of medication your sons are taking. I have four children, Andrew being the youngest and having DMD. His illness has affected my life drastically and I have a hard time coping with the obstacles he will face in the near future. How are your boys doing?
He's with you all the time...he's all around and watching and there to talk to anytime even if not out loud...you think of him and if sad, he touches your heart and you just have to know it...he's helping so many others at the same time but, always with you and have no doubt. xoxo
Yes, we should have and are very grateful that we were able to send your family their own set of "Moments Butterfly" Candle Holders along with a set of candles, thru "Scents for Duchenne". Thank you for sharing your story of your son with another family who shared about their son to your family of how your special sons visit with each of your families on your page under comments. Your corresponses between each other touched our hearts that helped us make our "Scents for Duchenne" Feb. selection!
Hope all is well with the Poole Family,
Richard and Nicole if you have read any recent e-mails I have sent to you or read on my page about how Adam and I chose this months selection for "Scents for Duchenne", then you would have read that I would be asking your family and the other family that their story touched my heart which happens to be your friend Ana and her family.....at this time I was wondering if you could share your mailing address with me and my family so, I may send each family the Moments Butterfly Votive Holders with candles, this is something that we really want to do. If you could share this with Ana and ask if she will send us her mailing address.....you can do it by sending it to my e-mail address email@example.com.
Cheryl and Adam
Angels that what they are.....your son and the others that have passed are Angels amonsgt us! I am sorry that I haven't even given your family my condolences for your lost of your very special son Tyler! Your other son Spencer has DMD, is this correct that I am reading on your page.
I think about all the boys I have known here in Maine personnally that have passed from DMD, BMD and other forms of MD.....they all have a special place in my heart and taught me so much about life!
You have a great family!
Hey, thanks for corresponding back! If you all are ever up in Maine again, maybe we can get a chance to meet. We are a couple of hrs. away from the area you guys were at.....but, Adam and me can get away pretty much anytime where as I am his paid caregiver......the only thing that would keep us from traveling is funds of course! Adam's front wheel drive chair works good on grass and terrain out in the woods ( but, a wheel terrain wheelchair would be best ), at times we have to help get the chair over some areas.
Just got reveiwing your profile, it's great seeing a dad doing the writing, usually it is the mom, usually see alot of dads that are involvedwith their families, but don't want to talk about the muscular dystrophy part.
Please share about the new fundraiser I started "Scents for Duchenne" ( info on my page ). Working on designing a label now for it! Thinking about having a contest to have designs submitted.
Hi Richard - I smiled when I read Tyler comes to you as a dragonfly. We get our visits from Jeffrey as a butterfly. He loved butterflies and would often sit in the garden for hours looking at them. We planted 4 butterfly gardens in our garden in memory of Jeffrey (plants that attract Monach & orange/brown butterflies). I see Jeffrey in my 5yr old daughter - Gabriella. The two of them are SO much alike it's scary. I watch Gabriella sleep and it takes me back years to the times I used to watch Jeffrey sleep.
Thank you so much for your comment!!! We actually are very lucky that this did not happen to Cade. He also had large tonsils and adneoids, he was 4 when he had this operation, but we had no idea that he had DMD...We were on a roller coaster ride since he was born to try to figure out what was wrong...he was just diagnosed this June. This is a wonderful group of people, and I am also very glad to be apart of it. Is your wife a carrier? My husband and I are wanting to have another child, and I am not a carrier, but I am still concerned of this being germline. Cade is on deflazacort as well and seems to be doing well. He also takes vemma,calcium,Idebenone and soon Jeuven. Well my thoughts are with your family!! Thank you for sharing your story with me once again. Oh by the way we go to NationWide Childrens in Columbus, but we are in the process of trying to go see Dr Wong..
I am so sorry to hear about your son! If you dont mind me asking, what happened? My son is 6 and 1/2 and I guess just seeing a child his age pass, makes me worry even more, if that is possible. If you dont wish to share that is ok....I hope your holidays were good!!! God bless you and your family!!