My family was not affected directly by the tornadoes, but my father had a coworker that lost his daughter in it. We have a new high school now that is pretty awesome. I'm sorry to hear about your baby last year....that must have been devastating. I'm glad your new baby is OK though...what a blessing! I know this sounds crazy, but we are starting to wean Gabe off Deflazacort...we are on Day 5. I totally understand why everyone uses steroids, but we currently have Gabe on Protandim and the VECTTOR machine, so we are going to see what happens when we stop them. Just so we'll know. We don't want to regret anything down the road, so if he starts to show weakness again, we'll just start them back up. Wish us luck and good luck with yours too!!!!
Windy...I would like to finally comment on your post from 2009! I don't check this site often and for some reason I'm not getting notifications, so I apologize! I'm trying to stay more connected thru various outlets so why not PPMD?? Small world about the Enterprise thing:) I'm a LOT older than you though so I don't know if we know some of the same people. It looks like you live in Florida....where is Eustis? My Gabe is 6 now so we are still dealing with some behavioral issues too. He will start the 1st grade though...which is really scary! I hope to hear from you and I want to hear about your new addition too! Our website is www.hopeforgabe.org if you want to read about us:)
hi windy im kimmy watters you little boy is just handsome little man how is he doing today, i wanted to share that i have three friends boys have duchenne, and i realy admire how you cope everyday, just make sure you make time for youself.kimmy
Hi Windy. I'm Kathy Mcdonald and work for the City of Eustis. You commented on the obituary of my 17 year old with DMD that passed away November 2009. I was checking out the families in FLorida with children with DMD and I noticed you live in Eustis. Is your husband a Eustis FIrefighter? Congrats on the new baby on the way.
Your little man is GORGEOUS!!! Just keep your head up, because I had my own business when I was in CO we knew that he wasn't picking up the biting/banging from other kids because he was with me all the time, and when he was around other kids, I was supervising and would definitely not allow that kind of behavior =)...it just was something he did, and he grew out of it after the chaos of life stopped...I have no clue what your life is like right now, but keeping the chaos down has helped him tremendously, and us! I pray that your son doesn't have either, but I as well believe GREAT things are in our future! Hugs to you and your family! Cori
Hi Windy - great to hear from you - I don't think anyone of us ever gets used to this craziness... but we will get thru this for our boys. Our Levi also has a point mutation, exon 22.... did you ever imagine you'd be talking this lingo??? Are you going to PPMD Atlanta conference? we are!!! This is a phenomenal way to get to know others who are TRULY in your shoes... no one knows what this feels like BUT GREAT things are coming. xoxox perlita
What a beautiful little boy! Thanks for the note. Glad to hear he is doing so well! Keelan's just started taking more steps by himself and is talking/signing more. Is Skyler eligible for the PTC124?
Hi Wendy, Does your son go to Shriners yet? If not it would be helpful. Dr. Raymond Fernandez is wonderful and he goes to Shriners. He was very instrumental in my granson getting in the clinical trial for PTC 124.
Willie will be having another muscle biopsy 4-8-09 for the trial. His trial is nearly over. It appears that his stamina and strength has improved. I just hope that what we are seeing is what we want to see.
I pray for all the boys and their familes with this disease.
Sorry I have not been keeping up with emails or blogs. My grandson Willie was diagnozed when he was 3. We live in Clermont and would like to chat with you.
Sometimes with this disease you read everything you can possibly read and other times you just can not face it, My daughter has her ups and downs with this.
He is in the PTC124 clinclal trial which has been very difficult for the family. As she has a 10 year old son that she has to leave behind when she goes with Willie. Thank God he is free of Duchennes.
I promise, I will make a bterr effot to keep in touch.
Congrats! Thats good that you are not a carrier,I found out a few months ago that I am the carrier which is weird because there is no family history of MD but my son has a stop codon on exon 14 and they tested that flaw on me and I have the same flaw. I just remarried in September and we want to try for a girl but I am very scared. Take care,Jessica
Welcome Windy to PPMD! I am sorry you had to join, but please take comfort in knowing that there is a wealth of information and support here. My little guy Ryan is 3 1/2 and was diagnosed last May with DMD. He also has a frameshift mutation, but on exon 38. He is a happy and very sweet little boy. Unlike most others, my boy has no laguage skills at all, and for us that presents the biggest challenge. Evryone on this site has offered a ton of suggestions and advice. Where in Florida is Eustis? We live in St. Augustine. I would love to get together and hang out with some other families affected by DMD. Please join the Florida families group!!! Also, have you been to MDA clinic yet? We go to clinic twice a year at Duke in North Carolina, and twice a year at Nemours children's clinic in Jacksonville. Hope you find the support and advice you seek on this site. The days will get easier! Your little guy is beautiful!!
I am so glad you wrote. I am so sorry about your son. He is so cute...those eyes!! I know that ya'll have been as devastated over his diagnosis as we have. We are definitely learning to deal with our new normal. Beau and our two girls, Maddie and Amelia, are such gifts to me and my husband. We know that God has big plans for Beau's life despite the disease. We always "know" that, but at times it is hard to "believe" it.
Are you an Alabama fan?
Welcome to PPMD. You may find it a bit scary at times because you do not know whats ahead but just remember that we are here to help you. My son Ross is 14 years old and was diagnosed when he was much younger than Skyler so we can had time to get used to the idea. If I can be of any help please let me know.
Lynne from South Wales UK
Welcome to PPMD, Windy. You've come to the right place. Your son has the most beautiful eyes and happy smile! I've never joined a site that has as much support and great information as this one. There is not one question you could ask that one of the families hasn't experienced and could provide the best information and insight. I look forward to getting to know you. :-)
Welcome to PPMD. Thank you so much for your kind words. I am just looking at photos of your gorgeous little boy and thinking how much he reminds me of James at that same age - the physique is identical! And the happy little face beaming out is just the same. You have a gorgeous little man there!
I am so sorry you have had to find us under your particular circumstances. We have all been where you are before, some of us are just going through it now, and there are plenty more who are yet to go through it. Our son was diagnosed in September 2006 and I still cry myself to sleep many nights. In fact, whenever my husband and I go out for dinner together, the conversation always shifts to James and we usually have tears at the dinner table. Life sux! I will say though, that those crying episodes are certainly much less than they used to be, like in the first few months (that I hardly even remember) when I was crying all the time. My husband and I just have to hold out hope that a cure will come up in time for our son and all the other little boys like him. Our son has a nonsense mutation, leading to a premature stop codon. There is a drug out at the moment that may help him immensely, but it is being trialled and he was too young to take part. The unfortunate part about this disease is that no one cure will work for all the boys, so we just have to keep hoping that something will continue to come up and help more and more boys to either beat this disease or at least buy more time until a real cure comes about.
Anyway, the people on here have been my saviours and provided hope and support during my most heartbroken moments. They have a wealth of knowledge, so if you have any questions just post and you should get some great answers.
Anyway, we have just woken up here in England and are leaving for a month-long holiday in the sun (in Singapore and Australia - where we originate from) so we really need to get packing today. I have put it off for too long!
Take care of you wonderful family and I hope to get to know you much better.
What a beautiful family and a beautiful boy! So sad you had to join under the circumstances, but glad you found the community. I am not experienced with this disease, but I have friends such as Tanya who are. My prayers are with you!
Wow what a beautiful little boy, his eyes just melt my heart. Welcome, to the PPMD site, I am so sorry you had to join, but glad to have you here to help you in anyway we can. I am alot further down the road then alot of people so don't get discouraged when you read all the stories on here. You and your family will be different from others, but in some areas the same. We are a big family here, you can talk about anything and everything you would like to cover, and avoid what you don't want to know too, until you are ready. Keep your chin up.