Mail in those cards!

Well...we're off to the races, even if it is a little slow! To give people time to collect those cards we've decided to extend the collection until the end of April. For now - here are the collection details:

Arizona - give your cards to me, Bo Buchanan. I'm still working on places to drop them off - but for now you can mail them to Bo Buchanan, 4410 N. 33rd place, Phoenix Arizona 85018.

Illinois - for now, you can mail them to Sydney Young, 502 61st street, Lisle IL. 60532

Iowa - mail those cards to Megan Ramirez, 21005 277th Ave. LeClaire, IA 52753

As we get new places to drop off the cards or any events scheduled - we'll let you know!

All about Madi and SMA

Madison Maureen Ramirez was born on December 27, 2005. She came into this world eight weeks early and gave us all a little scare! But true to her personality, she was quite stubborn! She was pretty healthy for a 3lb 9oz baby! She was in the NICU for 5 weeks to grow and get big enough to come home. She came home at a mere 4lbs! Over the next two years she was fairly healthy. We had one bout of pneumonia and all the other junk babies get. But at 2 Madison's physical capabilities were lacking. We had been attributing her slow gross motor skills to her being a preemie. Doctors said she would catch up by the age of two. Well at two I went looking for answers. After going to one well known hospital, the doctor there spent all of 15 minutes and diagnosed her with cerebral palsy. She said that many preemies end up being diagnosed with even a slight case. She said Madi would be fine. Well, needless to say I wasn't very happy about that and didn't agree. How could she decide that in 15 minutes? So I went looking elsewhere. A good friend of mine suggested that I go see the Shriners that were coming in town. So I did. They took pictures of Madi and wrote down some health information and said they would let me know if she would be accepted. A few weeks went by and she was accepted and we headed to Chicago for our first visit to Shriner's. The doctors we saw were amazing! They each spent as much time as we needed and asked all the right questions. The neurologist, Dr. Silver, told us about this disease that he wanted to have her tested for. They took 7 viles of blood from her poor little body! It was called Spinal Muscular Atrophy. Just to rule it out, he said. So we went home. I looked it up but didn't read too much and kind of blew it off. It wasn't until 5-6 weeks later that the doctor called us back. It was a Sunday afternoon in April. We were playing outside with the kids when he called and asked me to get Tom and go sit somewhere private so we could talk. My stomach was in knots. I had no idea what he was about to tell us! He went on to give us the worst news of our life! Our daughter was diagnosed a Type II child with Spinal muscular atrophy! He went on to make sure we knew how serious and life threatening this was. It was a disease with NO cure and degenerative. She would progressively get worse! He made sure we understood that Madi would never walk, never crawl more than she was at that point, and she would live a shortened life! We were devastated! I handed the phone to Tom and went to the bathroom to vomit! It didn't seem real. The next few weeks were awful! We both cried ourselves to sleep every night! We held her with all our might and wanted to never let go! After the first stage of depression we both decided that she wasn't going to be the typical Type II and we would do everything in our power to make her walk and be normal. I could go on forever about all the struggles we have faced and all the lessons we have learned along the way but the best part is where we are today! Madi has been re classified a Type III!!!!!!!!!!!!!! She walks with a walker, sometimes without, and lives life to its fullest! She is just as stubborn as the day she was born and is so independent. She wants to do everything her sisters do and more! Madi is just Madi and really doesn't get the fact that she is handicapped! She wants to flip, jump, run, do backwalkovers, cartwheels, and everything else little girls do! We never tell her she can't, I just help her do them the Madi way! Madi is so happy and has such a fun outgoing personality. She is kind and sweet, funny and ornery! She lights up everyone around her every day! We are so blessed to have such a special girl and she is our inspiration every day! If everyone had a little Madi in them this world would be a better place!

CollectForACure - Feb 1st - March 31st

So...Christmas is gone, the tree is put away and the shopping is over. How many gift cards do you have left laying around? Do they have a few bucks left on them? Do you have cards you will never use? Then donate them to us and help collect for a cure!

Every year, billions of dollars in gift cards go unused. That's right - BILLIONS! Why let that money go to waste when we have a real chance to cure SMA in our lifetime! Since 1984 - FSMA has funded over $50 million dollars in research. Are you ready to collect for a cure?

Starting Feb. 1st and going until the end of March - we are raising money to help Cure SMA. Donate gift cards you'll never use or even those with a few dollars left on them. We'll turn those cards into cash and donate the money to FSMA - Families of Spinal Muscular Atrophy. A portion of those funds will also be used in each state to help sponsor a family attending the annual FSMA Conference.

Mobiles for Madi - Totals are in!!!

Well...just about 3 months after our collection efforts were over - the totals are in! I had a few problems getting checks and tracking some of the shipments, but after sorting it all out - the total money raised comes out to $894.45 . The totals break down as follows: $753.50 collected for 450 cell phones turned in, $$140.95 collected for 274 printer cartridges turned in!

Thank you for everyone who helped collect cell phones & printer cartridges and thanks to those who helped us out with collection locations! I'm hoping we can do this again next year - so if you find yourself with cell phones or printer cartridges to donate I will take them until I have enough to ship in.

new facebook page

If you are on facebook we have a new fan page called miracle for madi that you can join. My cousin Jessica set it up. We posted some pictures too. So as for updates, not much new. Madi is continuing to surprise us. She is still taking many steps on her own. She loves her walker now and is finally beginning to ask for it so she can go places. I want her to have independence. I was so sad at Easter when all the kids were running around and playing and she had to stay with the adults. She can't do stairs, the walker isn't so good on grass and if I put her somewhere to play the other kids don't stay too long. I hate it! Don't get me wrong, I am so grateful for the miracles she has shown us already! But the disease is still eating at my heartstrings.
Another thought, why is it that handicapped kids have to go on a totally different bus than all the other kids? Can't they just put that dumb lift on a normal bus? I took Molly to Kindergarten roundup a few weeks ago. They take the kids on a bus ride and all I could think about was next year when they may have to leave Madi behind cuz they can't fit all the kids on the short bus. It just doesn't make sense.
On a positive note, we started with a new nursing agency. For the most part, I love it. Tonight was the first no show. There might have been some confusion in the schedule. Thank goodness Grandma Maureen was here! Our nurses have been great. The only problem is we have had like 8 nurses in one month so that they can fill Madi's shifts and train people. I am hoping by May we will be down to 2 or 3 nurses. It is hard for Madi to form a relationship and trust anyone when there are so many people taking care of her.
The annual SMA conference is coming up in June. They change the location every year and this year it is in California. We have gone the last two years since we found out about Madi. It is such a refreshing weekend for Tom and I. We get to see all these families like us, hear the latest research and just enjoy Madi. As of right now we can not afford to go because of airfare. I am really sad and am hoping something comes through. I am asking if you know of anyone who has airline miles they would like to donate to let me know. We would gladly use them for you! Well if you are on facebook please join our page. I will try to update often. Continue your prayers for Madi! Thanks!

Reality Check!

So I am sitting here having a pity party for myself and Madi tonight! I know my mom will probably call me and tell me to change the title of this post, but nope, it really does suck! I think I have actually been in more denial than I thought about this stupid disease! It gets you when you don't expect it. Madi has been doing so good that it has been easy to be in denial. Well over the last few days she has developed some respiratory infection. And as all of our fellow SMA families know, that is the worst part. So she started with a cough and now it has just developed into thick secretions that she can't cough out! I came home from cheer tonight and the nurse told me that she choked twice. It scares me to death! She has never choked on her secretions before. So now I am scared that this disease is progressing. I hate that I have to be in constant fear! Her oxygen is good and we did the cough assist. Thank Goodness the nurse and Aunt B somehow got her to swallow or whatever happened. I went up to her room, snatched her out of her crib and didn't want to put her back! I just cried and looked at her and can't imagine ever having a night without her! But reality hit me and I realize she really does have SMA and she isn't the exception to the studpid disease! So I got out the suction machine that we have never had to use and made sure I know how to use it and its ready to go in case we need it. We started her on a steroid that the pulmonologist gave us the last time we were there, "just in case", and it is supposed to thin the secretions, I think. She was as happy as a clam tonight and had no idea why I was hugging her and crying and just didn't want to put her down. Say your prayers that she is almost over this illness. Thanks to my friend Clint who set me at a little ease and he is my go to guy because UNFORTUNATELY his daughter has SMA too. Prayers for their Ella who has walking pneumonia right now. Prayers for little Stella who is such a fighter!

new video

Well we are staying busy as always! We have a few exciting things going on over the next month or two. Just on Monday night, I gave a speech to some physical therapy students at St. Ambrose about life with SMA and the therapy that we do. Our amazing therapists, Tara and Katie, had given a lecture on SMA earlier in the afternoon. I think it went well. Madi acted like a complete brat. She kept interrupting me to tell me she was hungry or thirsty. Then she was just whining and being bossy. I can't imagine what these young kids thought. Wow, college kids are young kids to me now! I feel so old! Anyway, this Friday we get to attend an appreciation dinner at our therapy center. It will be nice for the kids to play, especially Madi, with some other special needs kids. And for mommy and daddy to interact with some other special needs families. Then next weekend, we get a weekend of spoiling! We were selected to attend a weekend getaway called Up With Families. We get to spend the weekend at a hotel with lots of other special needs families. Everything is paid for. Each girls will be assigned a volunteer and they will do fun stuff all weekend. They may go bowling, get their nails done, go swimming. We get to eat hot meals, get massages, have a free family portrait taken. I can't wait. What a special opportunity for us! There are some amazing people that volunteer their time to make this happen, including my friend Keely. I think once you participate they ask that maybe you volunteer the next year. Sounds fair to me! I am really looking forward to it!
The weekend of the 13th we have a cheer competition in Iowa City. I love watching my girls cheer. I love coaching too but I am so proud of what an amazing tumbler Morgan is and how darn cute Molly is dancing and stunting out there. Molly truly loves it! Then we have 2 competitions the weekend of Feb. 27 & 28th. The 27th is at Pleasant Valley and then that night we leave to Chicago for a competition the next day. I sure hope I am feeling better by then. I have a horrible cough that could be pneumonia. My sister has pneumonia right now and I have been coughing for a few weeks. My dr. has no appointments today and I took the day off, how frustrating! I will probably go to a walk in clinic! I have to keep my distance from Madi which is hard because she is a mommy's girl! It has been a blessing having my mom here to help. She helps get the kids off to school in the morning. Morgan loves to have her pick her up from school so she doesn't have to ride the bus for an hr. She is an amazing laundry lady! Thanks mom! I love you!
Madi got new AFO's yesterday. Those are her braces on her feet that she wears. He also gave us new shoes. I really don't like them. They are very wide and clunky looking. She looks handicapped wearing them and I hate that. I'm sure more attention will go to her feet and she will look weird! I think I may be on the lookout for some other ones.
We have one tough decision to make over the next few weeks. I have been looking into switching nursing agencies. The one we are with now is not very consistent. We have one nurse that we really like but they won't let us have her all the time because she would get overtime. They haven't found us a nurse to fill our time. Madi was sick for a week straight and we didn't have one nurse that week. One nurse we had was just too rough on Madi and actually got mad one time when she pooped her diaper. That made me so mad. We are having trouble potty training but I'm sorry that is part of the job requirement! I have just had a lot of issues and have heard great things about this other company. So I am praying that I will somehow get a message about what the right thing is to do. Well that's it for now. Check the photo gallery for new pics. We also have a new youtube video that my marvelous niece Malorie made. It is called Madi's Miracle. Check it out!
One more thing, I have been talking to a new family that has just recently had their almost 3 year old diagnosed with SMA. She is the cutest little girl. She is a type III and still walks. Her family is grieving over the loss of dreams we all once had. So please keep them in your prayers. They also have a 7 month old little girl that was just tested yesterday and it will take a month to get the results. What a LONG wait! I feel like our families have a lot in common and I can't wait to meet them. Please pray that the Lord does not bless them with 2 SMA children. That must be even harder! Well have a great day!

Last week for phones!!!

It's finally here - we're pushing into our last week of cell phone collection! Donation boxes are still out and we're still collecting phones. If you received a new phone for christmas - we'd love to have your old one. Drop off your old cell phone at any of our drop locations - or just leave a comment and we'll find a way to connect.

Madi makes the front page!

Yesterday Megan and Madi had the opportunity to speak to Royal Neigbhors, an organization that helped fund the Standing Dani. Megan did an awesome job speaking in front of a large crowd - and madi won them over with her smile! Read all about it at the QC Times.

Special Thanks to the Ecology Club at Martinez Middle School!

I just wanted to send a special thanks out to the Ecology Club at Martinez middle school in Romeoville, IL. As part of America Recyles Day on November 15th, the ecology club held an awareness & recyling event at Martinez middle school. Madi's aunt Holly, who lives in Romeoville, stopped by and picked up the printer cartridges yesterday. The ecology club donated 175 printer cartridges collected during America Recycles day. Thanks go out to all the members of the club as well as Carolyn Morelos who helped coordinate the collection.

America Recycles Day - Sat, Nov. 15th

This Saturday is America Recycles Day - Coordinated by www.americarecyclesday.org Check out the website to find local recycling efforts. I sent a few emails to those nearby asking if they received any cell phones or printer cartridges that I'd be happy to pick them up for our MobilesForMadi.com collection efforts.

Sick

Hey everyone, say a prayer that Madi can get over this one quickly. Sunday she started coughing and by late Sunday evening she had a 102 fever and a really bad cough. I stayed home with her today and took her to the doctor. Her white blood cell counts were at 11,000. He said this is right at the beginning of being high. He thinks she may have walking pneumonia. As for now we are just to watch her. Keep giving her the decongestant and fever/pain relief for her temp. She was in quite a good mood today and the cough didn't seem too bad. The cough got worse as the night progressed. She is sleeping now with no fever. If she gets worse the Dr. will check her counts again and then maybe start her on a steroid. He doesn't like to start her on it yet because the steroid breaks down the immune system and she is susceptible to more illnesses. So we will pray she can fight it. We used her couch assist and checked her oxygen. Her oxygen was actually at 100% surprisingly. She was a beast and very crabby for our nurse tonight.
On another note, I got to watch Oprah today. She had Ellen DeGeneres on and Ellen was apparently on a quest to get on the cover of O magazine and she kept at it until Oprah answered her and she will be on the cover next week. So I thought why not try that tactic with Ellen. I emailed the Ellen show and told them about our mobilesformadi fundraiser and asked Ellen for help. I suggested she collect them from audience members or maybe all the people she knew. I said she could help us reach our goal of 10,000 phones. I also said that she inspired me not to give up and that she would continue to hear from me. Hee hee! I plan to write every other day, call any number I can find for her studio, and hopefully video my efforts and youtube them. I am going to video Madi saying something too. What the heck. Ya never know until you try. I tried Oprah last year and she didn't respond. I plan on being a little more forceful this time.
Prayers to the Turnbull family as they are fighting some sickness at their house too. Please keep our friend Sergio in your prayers as he is fighing leukemia for the second time. We love you Serg!

Thank you to our supporters!

Just to give everyone something to shoot for we've setup levels of support! Each week we'll publish the names of everyone meeting the next collection level! But remember -every phone we get is important and if you only collect one - we appreciate it just the same!

Bronze Supporters - collected or donated 20+ phones
Sydney Young - 20 Phones! Go Sydney - our first Bronze!

Silver Supporters - collected or donated 30+ phones

Gold Supporters - collected or donated 50+ phones

Platinum Supporters - collected or donated 100+ phones
Ecology Club, Martinez Middle School - Romeoville - 171 Printer Cartridges!

TRIVIA EVERY THURSDAY @ FOX & HOUND!

If you've got some phones or printer cartridges and you're looking to drop them off in person - stop by and see me any Thursday night at the Fox & Hound in Aurora. Located at the corner of Rt. 59 & New York Ave (Yorkshire Shpg Center, 4320 E. New York Ave - Aurora, IL 60504) - Fox & Hound has trivia night every Thursday night from 9:15pm - 11:15pm. DJ Gabe hosts the trivia and he's a blast - he's been a big help offering to get the word out about our phone collection efforts. I also wanted to thank the manager Erin and our awesome waitresses Jackie & Mindy who are spreading the word!

Day One - Send us your phones!

It's finally here - today marks our first official day of the cell phone collection drive. Even before starting - we've collected almost a dozen cell phones and a dozen printer cartridges. The cell phone collection drive will last from November 1st, 2009 until January 15th, 2010. Our goal is to collect 5,000 cell phones to raise $10,000.

If you're looking for a way to get involved, here is a list of our current needs:

1. Gift Cards - we'd like to use gift cards as a way to sponsor contest prizes for those who collect the most cell phones. collect the most cell phones.
2. Printing Services - throughout the collection drive we will need flyers & posters printed to advertise collection locations.
3. Cell Phone Collectors - we are looking for 150 people that can commit to collecting 30 phones over the next 10 weeks.
4. Event Sponsors - over the next 10 weeks we would like to hold events that promote the collection of cell phones.
5. Cell Phones - if you have cell phones to donate, check out our list of drop locations. If you can't get to one of those locations - just collect 10 cell phones and click on the Contact Us page. We'll send you a free shipping label.
6. Printer Cartridges - it doesn't matter if they're inkjet or toner cartridges - we can take them. Just visit one of the drop locations or contact us about getting a free shipping label.

Documents & Resources

Throughout the fundraiser - we'll be updating this page to contain links to all the documents & resources you'll need to help collect funds or just give you more information.

DOCUMENTS:
.pdf files will open in a new window

Factsheet about SMA

Goals Checklist

Locations List

Press Release

Donation List - a list of items we can collect during the fundraiser.

Collection Ideas - tips and ideas on how you can increase your collection efforts.

Donations Spreadsheet - keep track of people you wish to thank after the fundraiser

Collection Sign - Drop Off Location - this is a fillable .pdf with a line for the group name (insert MobilesForMadi.com) and a line for the collection location. You can make this sign as small or as large sign as you like - it should size perfectly for whatever you are printing.

Collection Sign - No Location - this is a fillable .pdf with a line for the group (insert MobilesForMadi.com). You can make this sign as small or as large as you like - it should size perfectly for whatever you are printing.


Resources:

CureSMA.org - created by Families of SMA, this group is dedicated to finding a cure for SMA. Eerything you need is here - from background on SMA to research and the genetic blueprint of SMA.

GRCRecycling.com - this is one of our fundraising partners. We will be collecting cell phones and selling them to GRCRecycling. You can customize fundraising posters here and even order them for free w/drop location information printed on the flyers.

MobilesForMadi.com - Updates on the Fundraiser and collection efforts. This url will lead you to a page of cell phone collection posts only.

MiracleForMadi.com - the Full contents of the the blog which contains blogs my Madi's mom, Megan Ramirez, as well as updates on the fundraiser collection efforts.

Halloween

Well we had a lot of fun last night, but a little exhausting for me. If you have ever been out to my house, houses are not so close together. I knew I couldn't carry Madi the whole time so I decided to use the wheelchair. I got quite the workout. The first neighborhood we went to all had steep driveways! Wow! Thanks goodness Kim took a turn with me. My legs are sore today from trick or treating! LOL!
Also, until you are faced with handicap accessibility, you never realize the obstacles there are. We couldn't get up to ONE door. We had to wait at the end of the steps and hope the person inside would see her. If not then I would ask if I could take the bowl to her. Because if someone brought her a piece she was not happy. She wanted to pick her own! At the second neighborhood there were sidewalks, and I was so grateful. UNTIL! I realized that it was a new neighborhood and the sidewalks randomly began and ended depending if a house was built by that lot or not. Ughhh! Grass isn't your friend in a wheelchair!
Then at one house, after I asked the lady if I could take the bowl to Madi she looked at Madi and then at me with the most disgusted look I have ever seen! You would have thought the lady just saw death. I don't know if she has never seen a kid in a wheelchair or if she was shocked. It almost felt like she looked at me as if to say, "What the hell did you do to your kid?" I haven't seen one of those horrified looks yet, that was a first of, I'm sure, many more to come. Anyway, at least Madi didn't notice. She loved every piece of candy and tried to eat each one, wrapper and all. At one point her candy bag got caught in the wheel of the wheelchair and I thought I was going to have to take the whole seat off, but I finally pulled it out. Overall, the kids had a great time and got plenty of candy! I'll try to add a picture later today. Remember to tell everyone you know about our new fundraiser, mobilesformadi. Thanks!

DROP LOCATIONS

This list will be continuously updated throughout the cell phone drive. Drop your cell phones & printer cartridges at the following locations:

Chicago’s Western Suburbs

1. Four Lakes Lodge & Pub 5750 Lakeside Dr, Lisle IL. 60532 630-724-0450
2. Donut Den, Joliet 3021 Theodore St, Joliet IL. 60435 815-267-3810
3. Software Reruns, Naperville 2603 Aurora Ave, Suite 119 Naperville IL. 60540 630-778-8810
4. Kettley Realtors, Aurora 503 W. Galena Blvd, Aurora IL. 60506 630-896-5000
5. Kettley Realtors, Oswego 58 Chicago Rd, Oswego IL. 60543 630-554-8700
6. Kettley Realtors, Yorkville 720 N. Bridge St, Suite B Yorkville IL. 60560 630-553-5060
7. Kettley Realtors, St. Charles 203 W. Main St (Rt. 64) St. Charles IL. 60174 630-584-7000

Quad Cities – IL/IA

1. McDonalds, LeClaire 1403 Eagle Ridge Rd, Suite B LeClaire, IA 52753 563-289-4801
2. Happy Joes, LeClaire 119 N. Cody Rd, LeClaire IA 52753 563-289-3305
3. Happy Joes, Moline 2041 16th street, Moline IL 61265 309-764-3388

Countdown to Launch!

2 More days and we officially start our Mobiles For Madi cell phone collection drive! Another fantastic sponsor has agreed to come on board in the Quad Cities. A big thank you to HappyJoes in LeClaire who has offered to help us in the cell phone collection drive. Whenever we get together for a family event in LeClaire, IA. we usually end up at Happy Joes. The Joe Taco is a big hit with everyone! You will be able to drop off your cell phones at the Happy Joes in LeClaire and Moline - stay tuned for our full drop off list!

We're Rockin & Rollin Now!

Thank you everyone - we haven't even officially started and we're off to an amazing start already! Today we're happy to announce that we've got two more drop off locations:

The Lodge in Four Lakes - If you live anywhere in the surrounding area, I know you've been to The Lodge! Pasquale, the Manager at The Lodge in Four Lakes is excited about helping put the word out and we're looking forward to hanging at the Lodge and collecting some cell phones! The Lodge Pub & Grill is located inside Four Lakes, 5750 Lakeside Dr, Lisle IL.

McDonalds in LeClaire - Umm...I'm addicted to Mickey D's. That new 3/4 pound Angus Burger Rocks! Thanks to Kevin Murphy of LeClaire McDonald's. This is our First LeClaire drop off location - and since Madi lives in LeClaire - it makes sense! LeClaire McDonald's is located just off the I-80 and Rt. 67 at 1403 Eagle Ridge Road Suite B, LeClaire, IA 52753

Stay tuned as we count down to the official launch of our fundraiser! We've got all kinds of ideas and events in the works so we can have fun while we do this! Thanks everyone for all your help!