Monday, March 30, 2009

Be A Hero Become A Donor Wristbands are Here!!


Things are coming together for the Foundation, including our new wristbands. On the outside it reads "Be A Hero" recycle logo "Become A Donor" recycle logo. On the inside, "Inspired by Evan Cousineau's Jounrey" "BAHBAD.Org". Super cool, Evan would have loved them.

Gabi Hosts Marrow Drive at Cal


Today was the Marrow Drive I have been waiting for all semester. Like I told Gina, it went well, but I wish I could have been able to target specific organizations or teams to sponsor the drive and get the word out. I feel it would have been a lot more effective, but I learned for next time. Other than that it went well and it was definitely worth every minute and all the work that everyone helped put in.
I spent the last few months trying to organize announcements, forming emails and sending these out multiple times before the drive. I realize these days people are busy, time is valuable so I cherish those that took the 15 minutes to actually come in and help “save lives in honor of Evan.” I was really excited to see the few people that came in off the street just from seeing the signs I had posted in front of the building!
I wish I would have been able to get more people to join the registry (only had 20) but I understand this is my first time doing it and no matter what every little bit helps. Cynthia from NBMR even told me leaving today, “someone will be a match from today.” This made my heart smile! Even though this person might not end up being a donor, the fact that they could potentially save a life is a wonderful feeling.
I really want to thank Gina for encouraging everyone to run a drive. It is really beneficial, not only for all of the new registries we get but for yourself, knowing that YOU are helping to save lives.
One thing that really irritated me throughout this whole process is that most people are so uneducated about the NBMR. Everyone has misconceptions that are stopping them from joining the registry. Every time I would make an announcement, people would look at my like, are you crazy, “I’m not giving my marrow, I’m not having surgery.” Some don’t even understand that joining is just a swap of the mouth. And then when you tell them this, they are still hesitant because of the process in the future if they are called. The thing they don’t realize is that they are saving a life. It irritates me so much because all I can think about are the people in my life that have died, and Evan, whom I am doing this all for.
It makes me angry and want to say to them, “Your selfish and you obviously haven’t had a close death or else you would realize how precious this opportunity is and you would value life a whole hell of a lot more.” Although I refrain from saying something along those lines and just walk away, not wanting to get myself all worked up.
All and all this experience was really amazing, yes hurtful at times when I encountered those that are uneducated about the NBMR, but I would do it again! I am coming home, down to Southern California when school is out in 3 weeks and would love to join the Cousineau’s at all the upcoming events and do whatever I can to help out. This experience was really self rewarding, for myself, because I knew I was doing such a great thing, but even more for those whose lives I hope to save. Gabi April 26, 2008

Sunday, March 29, 2009

Ronnie's Life Ministry decided to "give HOPE" by hosting a drive!!


I decided to host a drive because I felt like that was the very least I could do for Gina, for Evan, for Dom, for Mary…. And hopefully for others! How very simple it was. God has big plans for all of us and I just knew that this was something I was supposed to do. I already had a luncheon set up for our group of prayer warriors and the two events just seemed to go hand in hand. Hosting a bone marrow drive gave others a chance to participate in something they may have never had the opportunity to do. Quick, easy and a true blessing! I thank Gina for her hard work and dedication to saving lives in honor of Evan! We are so proud to be a part of your team!
Click here to visit their Website

Wednesday, March 11, 2009

Bone Marrow Recipient Stacey shares her story!!



Click Here to Watch Stacey's Video

Vicki and Friends "Give Hope" with God's Money!!



....I want you to know what an impact Evan has had on me...A couple months ago I was part of a 'Kingdom Assignment' at my church. Our Pastor gave me an envelope with $100 in it and we were told that this was God's money, That we had to do something outside of our church with it and report back to our church what we had done..well after following your family, the Stephens family, the Wagner family, the Lieser family and the Johnson family and many, many more I decided to take 'Gods' money and make blankets for the kids that are in Children's Hospital and the University of Minnesota and I am asking friends and family to help me make more!!! We are also donating hats for the kids too!! I want to tell you that fortunately I have not experienced what life changing events you and all these families have, but that your son Evan, Joel, Levi, Isaac, McKenna and many others is what inspired me to make this my 'assignment'. Your families have touched my heart and I hope by doing this..I am helping in some way! I wanted you to know how Evan impacted someone he has never met!

After starting this project and after choosing which hospitals to send them too, I also learned that my brother was a patient at the U over 40 years ago with Histiocytosis. He is considerably older than me and I was aware of him passing from Histiocytosis but was unaware he was treated at the U also!

We donated 56 blankets and 37 hats, split between the U and Childrens in June '08!

Sunday, March 8, 2009

Little Erin wants her family to be like Evan's Family!!



Can you read this little girl's words??
I hope we all get along in this family so we do fun stuff and get stuff done, we have (to) work like a team. We can do this!! I know we can be like Evan's family they all love each other, they help each other and they do fun stuff with each other!
To: Family
Love: Erin V.

Erin wrote this a couple days after your birthday celebration in which we had the honor of attending. Just being around you, your family and friends that day, you could not only feel but see the love that surrounds you. I have always told my kids, to be kind to each other, treat others the way you want to be treated and if you do not have anything nice to say, don't say it. I have used your family as an example many of times with my kids and my husband. The day of your birthday celebration, I'm sure my husband thought I was crazy for driving down to SC to donate blood for someone's birthday, who I hardly knew (I feel I've known you a lifetime). I knew this is what I wanted to do and was going to do it, and I wanted my kids to be a part of it. Because of Evan and your journey, I have learned to do things on Evan's time, love on my kids and husband, not sweat the small stuff, and just enjoy my family and life. You are truly making a difference and giving HOPE to others.

The Stennis Foundation is part of Evan's Entourage!!


Our friend Trish, with The Stennis Foundation, hosts a "Walk" to honor all our Leukodystrophy friends and raise funds to help others like us, as well as fund a Marrow Registry. Way to look beyond your own cause to help give HOPE to others.

Robin Hosts Marrow Drive at her College!!


Hey Gina,

The part of your post tonight about what Evan is doing in heaven made me cry. It is so beautiful to think of him in such a perfect place. And how excited he must be to watch his older sister be such a hero! You have really raised an incredible family.

Also, here's the description of how I did my drive!

I just finished holding a bone marrow drive at my school, Carleton College, in Northfield, MN. Although we have only just over 1900 people at the school, we managed to produce 124 new donors. It was a raging success!

At the beginning, I wasn't sure exactly who to contact at my school about holding the drive, as the event was the first of its kind here. The biggest thing the "authorities" were worried about was the funding that I needed so they passed me around to a few different people. I kept saying that I needed ZERO funding, as the National Marrow Donor Program completely funds marrow drives at colleges. Once I found the right person to contact (the person in charge of campus activities), things came together seamlessly. I just reserved a table in our snack bar area for a few hours on the day of the drive and got some advertising space. After that, everyone I have talked to has been incredibly supportive of the cause.

To advertise, I made a Facebook event and invited EVERY SINGLE ONE of my Carleton friends, no matter how well I knew them, and told them to pass the info on to their friends. Eventually, two girls that I didn't know contacted me who were eager to help on the day of the drive. They already knew how the registration process worked, so they were VERY helpful, as Beatriz (the NMDP rep) and I could not have handled the masses of people who were jumping at the chance to help others. I also printed out posters, which printing services offered to do for free (partially because I work there and partially because they recognized the importance of what I was doing) and hung them up in the bathrooms of dorms (everyone has to use those, right?). I put my contact info. as well as www.marrow.org so people could be informed about the commitment they would be making. Finally, I put an ad in a bulletin that comes out at lunch time explaining away myths about bone marrow donation, which was also kindly printed for free.

I held the drive from 11-2. At my school literally no one has class between 12 and 1, so we had loads of people sign up during that time. The only thing I would have done differently is have the drive go until the next class got out so that more people could have finished their forms during class. I was so thrilled to see how many of my peers showed up to help make a difference. Of course, some people were scared and skeptical at first, but only a handful of people were still unconvinced after talking to one of us.

Hosting this event was a really incredible experience for me. It was really refreshing to see the enthusiastic humanity come out of my fellow Carls that isn't always apparent in college students and it felt great to hold the drive in honor of Evan and Caroline. I am hoping to make this an annual event that will continue even after I leave Carleton. Putting the drive together was ridiculously easy and I definitely encourage all college students to consider holding drives at their schools.

It was amazing, Gina. I never would have had the courage or motivation to put something like this together before. Evan has really changed what I value. Sometimes that can be hard in college, but I appreciate these aspects of life so much more having known him. Thanks for letting me be a part of it.

Love,
Robin

St. Patrick Catholic School, Rockville, MD, honoring Evan!!


The students at St. Patrick Catholic School in Rockville, MD, have enthusiastically joined Evan's Entourage! Librarian, Sue Iciek, has told the students and their families the story of Evan's courageous battle with ALD and about his amazing family. They have started collecting pop tabs for RMH and hope to do even more for Evan and RMH in the future. The Cousineau's are in our thoughts and prayers each day. :)

Join the FIGHT FOR EVAN!!

This past November, a delightful young boy, Evan Cousineau, lost his brave but short fight with ALD. This horrendous disease claims the lives of many children. During his illness, Evan and his family received love and care from the Ronald McDonald House. This organization provides car and supports for thousands of families every day of the year. Evan’s amazing family has started the “Fight for Evan” to help save other young lives. One very easy thing we can do is to collect pull tabs from aluminum cans. The tabs will be given to the Ronald McDonald Chapter in Baltimore, and they will receive money from a local recycling center. Please begin collecting tabs at home and ask friends and family to do the same. The collection box will be in our library. If you have any questions, contact Mrs. Iciek at school. To learn more about Evan and his journey, visit www.caringbridge.org and enter the name evancousineau. Thank you for your support!

UPDATE 2/09
They have been collecting tabs for one year now and have shipped 3 large cartons of tabs to RMC in Baltimore. the kids were thrilled to get a nice thank you from rmc and also to be told where the funds from the tabs are allocated. they feel so good about what they are doing. mrs. iciek continues to keep them uupdated about evan's entourage, mary's donation to dom and all the good being done by evan and his loving entourage. they hope to hold a bahbad drive in the spring.

Everyone can make a difference in "giving HOPE" to patients and families in need no matter what their age.

Gina Gives HOPE by Educating A Friend in Need!!

Hey Ginabina,
Long time no talk........................devestating news..............my neighbor's husband took his own life. He used to play for the Houston Astros until one injury after another ended his baseball career. He had such horrible pain. This past May he had a shoulder and hip surgery that were both unsuccessful and his pain was worse than ever. He took too many pain pills and started drinking. He ended up getting arrested for a DUI and two days before he was to serve 6 months in jail, he took a gun, went to a liquor store, drank a bottle then went and sat down by the dumpster and put the gun in his mouth. Worse than that, his wife didn't know anything, and was going to Dunkin Donuts to get the kids breakfast when she came upon the crime scene, noticed his car there.....then "saw him".................horrible. She was so upset and so mad at him.......no one in the neighborhood seemed to be home but me. I brought her to my home while a different neigjhbor took her 3 small children. The coroner had not even picked up his body when the Tissue Bank called her asking if she would donate his tissues.................she pretty much told them to leave her alone. THAT turned out to be the reason why i was the only one home to be with her. I brought up the tissue bank website and right there in black and white it said that the number one need for tissue donors was to assist injured athletes. I spoke to her about making a bad legacy into a good legacy.....how maybe he would in death prevent another athlete from the same kind of pain. She called them back and donated any tissues and valves etc... that they wanted or could use............and now her kids will know of Daddy's gift......and they can be proud! YOU and Evan put me there with her! Thank you Gina and Evan!
Love,
funny lady

Sunday, March 1, 2009

Mother of 4 donates her Kidney to stranger!!



Raegan and Donor Staci
I had never heard of caringbridge before until a friend had a child with a disease that ended up taking her life also but that was when I was introduced to caringbridge and basically a whole new world. I have been very fortunate to live in a world with healthy kids and no one really close to me has ever had any major issues with there kids either. After following my friends site many others from different sites would sign on so basically I started going to these sites and offering prayers but always felt awful that I could not do more. It broke my heart that I could spend day after day finding new sites of sick kids it got to the point where I was so involved and depressed for all of these sick kids suffering and the parents who have to sit by and watch helpless that I had to quit going on to so many but yet I did not want to fool myself that the world was this perfect place either. I followed about 25 sites regularly after that and just told myself I could not keep going onto new sites all the time.

Evan was one I followed regularly but then one day for some reason I stopped getting the email updates from caringbridge so had to try and go off of memory who I had followed. After I saw Joel Wagners posting yesterday I was able to get the spelling of your last name and get caught up on what I had missed which was alot! Anyway I one day was reading on one of my regular sites and they had a request to go to a site of alittle girl who needed help so even though I had told myself I would not get involved in anymore I felt compelled to go the site and read about Raegan and how she needed a kidney. Her mother had planned on being the donor and when the time came she went thru the testing expecting it all to be fine and found out she had kidneys stones. I read her update the day they found out and all it said was I can not donate we are crushed that is all I can say and I just felt I had to try and see if I could help. I pictured one of my kids laying there as I had with many of teh other children I follow but thought this may be one I can actually help.

It was so strange reading your daughters words because I just had the feeling from day one that I would be the donor and it would all be fine even when they called to tell me I was a match but they had 2 others that were already in the 2nd phase of testing so I would probably not be needed I thought wow I just really felt like I would be doing this but great if they have someone so she can get the transplant sooner. Well about a month later I got a call that the other 2 donors were unable to donate after finding things in their exams so would I still be interested in pursuing and moving forward which of course I said yes. I got squeezed in pretty quickly and made the trip up for testing about 2 weeks later. I met Raegan and her parents and there was an instant connection.

It was a grueling week but I finally got the call that I was ok to donate so I called the Lombardis who had also been on pins and needles and told them and it was one of the happiest things I have ever been able to say to anyone.Most of my friends and family were very supportive only a few who questioned it but would support me no matter what and my husband was really upset about it at 1st just cause he worried about me and my health and having 4 young kids. I just told him it was not something I could walk away from because if something happened to her and she died before getting another kidney I would never be able to live with that. He understood and after getting more educated on it and meeting the family he was much better.

I pushed to get the surgery done quickly because the waiting and worrying about Raegan getting sick or myself would change everything so another 2 weeks and I was up and donating. I had some issues after with terrible nauseau but pain wise was not terrible. If it had not been for the nauseau the recovery would have been pretty simple actually. I also ended up having to have another minor surgery about 5 weeks later as the incision in my belly button had a reaction to the stitches which infected it.Both of my issues were total fluke things but would not sway me from doing it again. Saving a life and giving someone many years is worth about 5-6 weeks recovery for me.

My life has not changed physically at all I do all the things I did before and can not tell I am missing a kidney at all. After seeing how low the statistics are for living donors I was shocked and started trying to get the word out and educate people that they can easily save a life and help. Even if it is not a kidney or organ but simply blood or bone marrow it can save a life.

There were many angels looking out for us as the odds of me ever coming across Raegans site were low and the day before I was to come for testing they had gotten a call for a deceased donor kidney and were worried I may not be a candidate also so they had decided to take the kidney but after many delays and mishaps the kidney would not have arrived in time so they had to let it go so it is like everything was meant to happen the way it did.

Raegan went home for the 1st time ever after only 2 weeks and is doing great. The Lombardi's say all the time how grateful they are to me and how special I am but to me I am the lucky and blessed one to have been able to help such a precious child and in the process earn a whole new family. When I started this to me it was all about Raegan so when the news station called after hearing the story and the newspaper called i was very leary about doing interviews because to me it was about Raegan but then I realized if I did these things maybe one person would be watching and reading and say hey I could do that and try and help someone else. There really is no words that can describe the gift I gave and the feeling of amazement I get from it. When I hear them say raegan lives and breathes because of you it is so hard for me to wrap my brain around that. As a parent I just feel that many others would feel the same if they had the education.

That is basically our story in a nutshell like I said in my previous email please let me know if I can be of any help to you and your quest to get awareness out there. I am doing what I can and would love to do more. I applaud you for how you have turned your tragedy into triumph and making Evans life count and even after death he is still performing great things truly amazing!

Staci