Hey, Melissa. Great to hear from you! My Max is doing great. He turned 16-months old last week, and he's so fun! He's taken a few steps here and there, but hasn't committed fully to this whole walking thing! How are you guys?
I'm interested to see when Dr. Wong recommends Max starts steroids. Seems like I recently read about a kiddo who started when he was three! I'm hoping we can wait until he's four. I'm concerned about putting his little system on them so early!
I recently met with a nutritionist to make sure we were on track with what we're feeding Max, and she recommended I start him on a liquid multivitamin since he's refusing to eat most veggies. That's it so far! I wonder sometimes about all of the supplements some folks give their boys. I understand the use of some of them, but I'm up in the air on the rest.
Hope you had a great summer. I'm SO looking forward to Fall. These 100 degree (or close) days are getting to me!!
I'm sorry I haven't updated you, I've been exhausted, but it went pretty well. Kohl's came through for us, thank goodness so we get the $500, and we also made about $340, in raffle tickets sales, I have a few friends that are giving more money for the raffle, so I don't have a final number yet. I mean it is tough economic times, so not too bad, can't complain every dollar counts. Anthony and I were just thinking though can you imagine if 1000 people did an A-team event and made even a little more, just how much money that would be, if we each raised $1000 it would be a million dollars. I think you will do great because so many people will be at your event. I need to get you the PPMD items, even if I could meet you somewhere half way, just want you to have everything you need. You will need to tell me about your camping trip. Hope all is well!!
Got it - What is your email? My email is firstname.lastname@example.org which is easier for final arragements. My family will be in town these days but I am checking who is coming etc as we speak. Will keep in touch.
Turn on King 5 news they are going to be talking about Exon Skipping 51. I told PPMD that you were doing a fundraiser as well and they are sending enough for both of our events, I just needed mine sooner.
Sorry I haven't gotten back with you sooner. I was hoping Gavin would be feeling better. He has a bit of a bug and hasn't been feeling very well. He got up last night a couple of times and today he isn't doing well either. I don't want to pass it on and he might not be very happy tomorrow. I hate to do this, but can we reschedule? I will be getting some items from PPMD too, maybe in a week or two and I will get some of that for you too.
Can you email me at email@example.com. I have an email I want to forward to you, we did get a a booth at the Snohomish Days, yay!!!! I was still thinking along the same line. We can have educational brochures and things, but also be selling raffle tickets for the UW tickets and football, so a two in one shot. Carol Bell is the contact from People's Bank who organizes all the booths. She has a form to be filled out I thought I would let you take it from here. Then call Lorraine at Kohl's, she said if we got a booth there, they are happy to help do an A team event. Which automatically means $500 and help from their employees. I hope I am not overwhelming you or anything. Lorraine said to let her know as soon as possible so I'm happy we got a booth. I will have to contact PPMD to get some brochures and some Coach to Cure MD things. I have ideas as well about signs, pictures of Wyatt and things. I'm sure you have ideas too, so we can make this happen. Please let me know if you have any questions. Me :-)
I hope I will get a response today sometime :-). Do you mind if we reschedule our play date? I am miserable in this heat, swelling a lot and not feeling the best. It's hard being hot as it is then pregnancy and hitting almost 100's, yuk!!! I really want to meet you and your family, soon though. I know you will do anything for our little guys!! I could tell that from the moment we started emailing you are an amazing Mommy and friend. I'm sorry it's been so hot and that we won't get to meet just yet. I'm excited that we are working together on these fundraisers, it's so nice to have someone who knows how important it is and knows exactly how I feel. I will let you know as soon as I hear anything about the booth. I'm taking my kids and my neice to the free movie at the Supermall today and will then be finding another place with AC. Talk to you soon!
Here is an email that I sent to see if we can get a booth on Sept. 26th. No problem at all I wanted to help with this. I emailed her and I will let you know what she says. Then if that won't work I will have you call or talk to the manager at Freddy's to see if they can reserve a date for us. Anyway, looks like we may get something together for this :-). I will look up the address, but yes I'd be happy to meet you on Friday. Tonya ;-)
My name is Tonya Carlone. I wanted to find out if it would be possible to get one of the booths at the Snohomish Days, Sept. 26th. There is an event taking place called "Coach to Cure MD" on Sept. 26th. It is a national event taking place with Parent Project Muscular Dystrophy (PPMD) teaming up with the Amercian Football Coaches Association (AFCA). All of the coaches will be wearing a "Coach to Cure MD" arm badge to fundraise and for awareness. There is a local boy named Wyatt who is about 16 months old and he has recently been diagnosed with Duchenne Muscular Dystrophy. Also, my son Gavin has Duchenne Muscular Dystrophy. My new friend Melissa who lives in Snohomish would also like to do a fundraiser in her home town. I have one set up here in Covington, WA and Kohl's is helping us out. The Kohl's in Snohomish are also very much interested in helping out to fundraise and raise awareness of this lethal disease. They are many forms of muscular dystrophy, Duchenne is the only one that is lethal. There are however some upcoming therapies that will help thousands of Duchenne boys. We just need more funding and we can save our boys and the other boys that have this awful disease. We will have brochures as well as a personal story with an absolutely adorable little boy Wyatt. Is there any way we could get a booth, it would really help out. Below is a link to what will be shown to millions of football fans Sept. 26th. My son is the one wearing the UW football jersey, holding a football. Please let me know if you can help us in anyway. Check out the "Coach to Cure MD" website at www.coachtocuremd.org
The video, http://www.youtube.com/watch?v=ufeNxXto4a4
Loraine at Kohl’s in Snohomish said her team would be happy to help PPMD and Wyatt, they are very much interested in helping locally. She mentioned Sept. 26th, I guess it’s Snohomish days or something that maybe we could get one of the free booths. I can email her, but her name is Carol and her email is firstname.lastname@example.org. I asked about you doing the fundraiser in front of Kohl’s, but that won’t work. She isn’t too interested in doing the fundraiser at Walmart. She mentioned she knows the managers at Fred Meyer, the main manager is Jennifer or Jamie to call. That would be great though to get that free booth, tons of people there I’m sure. I will email Carol and see. Are you available on Sept. 26, that is the actual day of the “Coach to Cure MD” If that doesn’t work I hope for Fred Meyer. Loraine told me we will have to work fast to make sure they can get us in. She also mentioned if not the 26th with the free booth then the first 2 weeks of Sept, they may be able to plan an event. I will email Carol tonight, let me know what you think. I briefly told Loraine about the event and Wyatt and I told her your name. Lorraine can be reached at 360-563-0537. Let me know what you think!!!
PS. Sorry this has taken so long finally I got somewhere.
Hi Melissa, thanks! we are doing great. Yes, please let me know as soon as you have the dates since December are always dates in which we either go to Mexico or our family comes. Late November I think is lower risk. Looking forward to seeing you and the boys again!
I'm still waiting for Kohl's to get back with me, sorry for the delay. I did talk to the UW and the tickets and ball should be shipped out by the end of the week, so I feel better about that.
Thank goodness Wyatt was okay with the stairs!! They sure can scare and surprise us can't they.
I will keep you posted as soon as I hear back from Kohl's. Sounds good, I would check with Fred Meyer the one by us has a whole corporate thing they go through so you can do a fundraiser out front. That may have just been ours, but last year we tried there too. They told me they need a certain amount of time to clear it through corporate. Maybe your will be more leanient, sorry about the spelling. Talk to you soon :-)
I will check with my Kohl's contact. Yes, no connection you can do wherever you want. I just picked Walmart because it's close to us and they get a couple of thousand of customers a day. So you pick, just a suggestion :-).
Gavin walked at 14 months, however I think my cousin was around 2. So it definately varies.
Kohl's couldn't have us out front, but Walmart could. Can you try to call your Walmart today and talk with someone in personnel about reserving a date for the fundraiser. We are doing ours on Aug 30th, it would be great for both of us to have that date. You just talk to them about PPMD and the event and if we could please have that date. What Kohl's are you near and I will talk to my contact about it. That would be GREAT if your daughter's dance team could help too. I'm sure it would really draw a lot of attention and really help raise funds. I am a little nervous waiting for the tickets and the football. I have the Seahawks ball so cross your fingers I get the UW stuff. I emailed my contact and she said they are just running behind. I guess we do have a month.
Yes, I get a lot of comments on my busy little man. We still haven't started steroids yet because he is doing so good, running climbing. We will be starting though before he is 4 years old, apparently they will have less side effects if you start early.
This would we awesome if we can get both of these fundraisers going, together we can really make a difference!!!!! We did a fundraiser last year and I can tell you and show you what we did with Gavin pictures and things. I had several signs made of just Gavin as an 8X10 and laminated them and hung them around our neck like a necalace. It really attracts attention and people will stop and ask you about your son and the others wearing it. Putting a personal story really helps because so many people are unaware of this awful disease. Anyway, we will talk more about that. Let me know what Kohl's it is and I will work on it.
Great, I will see youe then. Also, just a thought, but we will have a lot of help with our fundraiser here. Kohl's is giving us 5 employees to help us and a couple of my good friends. I am wondering though, do you have a Walmart near you? and I know that there is also a Kohl's more North. I'm wondering if you would be interested in doing a fundraiser at your Walmart? You could do the same one as me and use the tickets and football from the UW, we could just combine the fundraiser for the tickets. Kohl's will give $500 to PPMD, if so then it would total a thousand just from both fundraisers and then how ever much we make from the raffle sales. Just a thought. I am just going to make paper footballs, so people can fill it out with name and phone for the raffle. Do you want me to ask my contact at Kohl's about incorporating the other Kohl's. I don't want to add pressure, just a thought. If not, no problem. I'm not going to bring Gavin, he is too active and hard to keep track of. He just runs off in a second. I would be so worried about what he is doing. I just make picutres of him and enlarge them. I do it simple, but it works. I really do appreciate your offer to help, but we have a ton of help here. I'm really looking forward to meeting all of you. Tonya :-)
HA! I get the 'preemie' question alot too! Forgot about that one! I had someone unsatisfied with "No, not a preemie' she asked, "Did he have birth complications like CP?". My mouth just dropped.
Keelan was 9 lbs. 10 oz. at birth (and fast labor...not as fast as Wyatt though!), then at 4 mos. also started to drop way off. I was just thinking recently how I do feel lucky for the extended 'baby time'. They do grow so fast. However, I will not miss having to crawl through the tunnel at the playground so he doesn't drop off of something on the other side!
Hi! I just read Wyatt's story (he is a cutie by the way!) and it is SO similar to Keelans! Keelan was diagnosed at 15 months when his gastroentonlogist ran tests to see why he wasn't growing. His CK level was 14,227. We were at the neurologists 2 days later when he said he was certain it was DMD. The genetic testing revealed deletions 42-46. I am not a carrier. He had a mutation. He still isn't growing very quickly. He was in early intervention since 9 mos. b/c he missed milestones. He started crawling at 11 mos. and walking at 21 mos. He is walking full time now, but falls down frequently. His speech is about 4 mos. behind, but he's gaining (now that he has walking down!). Ella is 4.5 years. They are both lovies and I feel very lucky. How is Wyatt growing now? Keelan is gaining weight (finally!) and is up to the 12% for weight and has dropped to the 3% for height. People ask me how old he is and I've literally been asked, "Are you sure?" "Why is he so small?" "Why can't he walk very well?" "He looks and moves like a 15 mos. old!". ugh....for now I let it go unless they push, then I tell them he has DMD (in hopes that they feel dumb for asking! lol!). When he get's older though, I don't want to define him by this so who knows what I'll say then!
Good luck with you guys! Oh, we went to see Dr. Tseng at Mass Gen, (Jett Foundation). He's going to start Keelan on an Ace Inhibitor early to extend time w/o heart complications, hopefully. They are very proactive!
Believe me I know exactly how you feel and I think it's truly so hard for others to know when they aren't facing this awful disease. I'm glad that you have times that you forget about the DMD and live normally. Don't feel guilty about that at all!!!! You know it's there and you shouldn't have to punish yourself for not constantly thinking about it. We have the same thing here, sometimes I find myself just enjoying the time with my kids and not even thinking about it. I am so greatful for those times, because I want to feel "normal" and I want Gavin to feel "normal". I wouldn't even think about your house right now. Wyatt is so young and really you have to have hope that there will be something for him. Maybe not a cure, but a therapy. Gavin is 3 and is still doing good. I do help him with the stairs sometimes, other times he goes up himself. Maybe something is wrong with me, but I don't like to think too far ahead. I do talk with other Moms of DMD boys and a lot of it is about redoing their house or talking with all the kids in the class about the DMD. For us, I want him to not have the worry about it until it's necessary. Obviously, I'm talking about very young boys, the older boys will need changes. I find with Gavin he knows his limitations and will not push it. He isn't as stable as other 3 year old boys and he is a lot smaller. He climbs on the things he can, but he limits himself. Other Moms take a different approach, all the kids at school know, they know a lot about it at a very young age and they limit the boys activity. I don't want Gavin to get worse, but I want him to enjoy and remember the feeling of not being burded with knowing too much about this disease too young. I really believe our little guys will limit themselves. I'm sorry I know I don't know the answers, but I find my life much easier to get let life be for now. It's hard not to let your mind wonder too much about the future, but Wyatt's deletion is perfect for exon skipping 51. I actually emailed a doctor in Germany who is working on the Prosensa exon skipping. It really will be available in a couple of years, not here, but there. I told him my son is 3 now and will it still be in time for him, he assured me yes it will and Wyatt is only 16 months old.
I know your husband can find 10 participants, will talk to my husband about it. It should make you guys feel so good, all that money is so important and you are doing so much for all of us.
July 31st works for me. My husband probably won't be able to come, but that's okay. I might try to bring my Mother-In-Law and then she can help me with the kids so we can talk. Have you been to Coulon park in Renton on Lake Washington? I will think about which parks work, I'm very open, but that one is pretty fun. My four year old loves it there!
I can't even imagine trying to teach my kids to drive, that would be hard. I'm sure you are doing your best, but I would be just like you. My Dad would take me out driving at night when there wasn't so much traffic and practice merging onto the freeway and just drive getting off at exits and getting back on. I think it really helped me because I would start panicing on the freeway especially if there were big semi's beside me. I just think it helped me learn that if I stay in the lines I will be okay. I'm dreading teaching driving!!
I will get more of the details for you with the fundraiser. I wasn't planning on bringing Gavin, however sometimes people are more generous when they meet these darling little guys. I will think about that and Wyatt is just a little cutie pie!!!!
What time works on the 31st, I can come anytime? I'm so excited to meet you and your family, we need to stick together. Like you said we are the only ones that truly "get" our heartbreak.
I think it is so important to be able to vent our frustrations about family and friends. No one else can understand what it is like to deal with this disorder on a daily basis. I reallly try to live in the moment but it is so easy to look at the future.