Hi Gina!
I pray that you’re having a good day and if it’s been a rough week (you’ve been a bit quiet) I pray this brings a smile to your face. Sending this from work since I can’t seem to get to my computer at home. With the upcoming birth please be sure to send any response to my home, wasn’t sure if I should send to your bahbad or aol address let’s give bahbad a try!

A little background...I work for a Fortune 500 company, and a company that has been consecutively listed as one of the Fortune 100 best companies to work. My company employee’s somewhere in the ballpark of 15,000 employees (give or take some give to recent cuts and layoffs) and one of the “perks” afforded to us are message boards where employee’s can post questions specific to parenting, cooking, gardening, auto etc and wait for a colleague to post their response to the board. One of the boards that I have been frequently recently is for Pregnancy (imagine that!) and just a day or two ago an individual posted a question regarding private cord blood donation...which company to use, pros and cons of each company and...was it worth it to bank the cord blood? Well, you can imagine my excitement... I had planned to post a detailed message regarding public cord blood donation after returning to work so I could provide a picture of the entire donation process but given the circumstances I felt the time was right to shed a little light on a subject you have helped to bring near and dear to my heart! Now I know that on a daily basis there likely aren’t 15,000 employees surfing the Pregnancy message board but I do know that there are a number of people that utilize this valuable resource and I’m hopeful that my quickly drafted post (need to summarize a bit more for general consumption) will provide some food for thought...just a reminder that every little thing we do, every time you reach out to someone the message gets carried along to who knows how many others. Out of who knows how many people that view this post a seed may be planted in 1 or 2 but that 1 or 2 may be able to offer the hope that a patient and family in need have been praying for. It’s a small world, remember your impact. This one’s for Evan...

Much Love From Iowa,
Kristi

Please note that the attached links should be viewed on your own time. Thanks! Also wanted to mention that I’m not at all interested in starting a debate on public vs. private cord blood donation but wanted to shed a bit of light on an option I had little knowledge of until a friend pointed me in the direction of public cord blood donation. From her family’s own tragedy she was motivated to get the word out regarding public cord blood donation. When the “unthinkable” struck her family they learned that her own child’s cord blood (which had been privately banked at birth) was of no use to their son, nor were his siblings...a cord blood transplant was ultimately deemed the best treatment option and two cord blood matches from the NMDP’s national registry were used for transplantation and provided their family with hope for the future.

I have personally never privately stored any of our children’s cord blood. With baby number one the concept was rather new and the cost was prohibitive and thus little consideration was given to private storage. With baby number two I did a bit more research and in our families case decided not to privately bank our son’s cord blood because we did not have a child or close family member with a condition that could potentially benefit from transplantation; and the reality is that most conditions that might be helped by cord blood stem cells already exist in your infant’s cord blood. So, along comes baby number three and since the birth of our last child I have learned quite a bit about public cord blood donation and have become quite passionate about this public option; baby number three’s cord blood will be donated to the Be The Match Registry (National Marrow Donor Program – NMDP), a national registry.
Public cord blood banking (or donating) means that the baby’s cord blood will be stored in a cord blood bank and is made available to anyone in need of transplant. It may also be used for research purposes to help bring us closer to finding “the cure” and/or new treatments for many otherwise life-threatening diseases such as malignancies, bone marrow failures, immunodeficiency’s, etc. Depending on where you live in the country you may not be the least bit familiar with this public banking option, my own OB/GYN had little awareness of this public option but once educated on the topic was excited to come on board with our donation plan!

Public cord banks pay for the collection procedure and the storing of the baby’s cord blood so there is no cost to the family for donating the cord blood. There are currently no cord blood banks located here in Central Iowa though there have been recent discussions regarding the feasibility of developing a bank for the state of Iowa. The University of Iowa does currently operate a research program and collects cord blood donations from deliveries performed at the U of I but there are no other locally housed banking facilities in the state. In my case, I am using Cryobanks International for the donation of our child’s cord blood. Cryobanks offers both a private and public storage option and works in partnership with the National Marrow Donor Program to store cord blood for the NMDP’s national registry and helps to coordinate transplants for patients in need and the process has been simple enough thus far...the downloading and completion of a health assessment, getting my Dr. to sign-off on the request and forwarding to Crybanks for review. Just yesterday I was notified that I have been accepted into the program and the required collection kit is being mailed out to me this week...just in time for baby!

The decision to privately bank umbilical cord blood is an intensely personal one and only you know what’s best for your family but I did want to remind people of this public donation option...particularly for Mom’s-to-Be who may not have previously given any consideration to the options that exist for their child’s cord blood.

Our family is looking forward to the birth of our baby and are hopeful and prayerful that the life-giving cells found in his/her umbilical cord blood will give hope and new life to a family in need.

Kristi


Update:

Hi Gina!

As promised here are a couple of pics of Camden Lynn and the Cord Blood that was collected. In the end we didn't get the media coverage we had hoped for and that was a bit disappointing but trust me...there was a lot of education provided to staff and visitors courtesy of the Webb Family and all seemed really impressed with how easy the collection process was and nearly all were completely unaware of the opportunity to make a public donation. As for the donation process and shipment...easy, peasy...and we could not have been "Congratulated" or thanked for Camden's donation more by the representatives at Cryobanks, they were wonderful to work with!

We as parents could not be prouder...a beautiful baby girl for us and heartfelt prayers that the joy and love her arrival has brought into our lives will also bring hope to a family in need. It's truly overwhelming to contemplate what this simple "gift" could mean to someone desperate for one more day to live, to love, to dream and to fight!

Wouldn't have known about this amazing opportunity to save a life without you and your amazing boy...thank you, thank you, thank you!

Much Love From Iowa,
Kristi

Bringing a Life into the world, and Saving another Life at the same time! Public Cord Blood Banking:

Gina,
Here is my daughter, Jamie, my son in law Joey and our beautiful new Granddaughter, Dakota Rose Bisant born 9/17/09 at Scripps Memorial.
Jamie was able to donate the cord blood and it appears that all went well there. While she was in labor there was discussion and concerns about publically donating the cord blood. They told Jamie they were unsure as to whether Jamie was gong to have to have a fee or not. Fortunately Joe had the donation papers with him and showed the staff there all the details given to them on the how/when/where ect....and it worked! I am proud of my girl that she followed up on this and so proud of my new Grand daughter.....coming into the world and helping at the start! I want you to meet Jamie, Joe and Dakota one day soon. Thanks for the encouragement to do this simple thing.....Hopefully Jamie's experience will encourage other Moms to do the same. I will be scheduling you to speak in my second semester....and hopefully at least for my class Jamie can come in and share her experience as well. We are thrilled to honor Evan this way and hope we can help some more!
Patti Peviani

The Smith Family's Journey with ALD

Gina,
Too funny. I was just thinking after I sent out my reply that I should just do a recap for you, but I had to get my kids off the bus! Anyway here I am and here we go.
I had/have a wonderful family. I loved my boys of which I have 3 in all. Our story of ald starts in summer of 2002 when my middle son Gabriel was having recurring bouts of dehydration and lethargy. He had been sent to the hospital for fluids, er visits , etc. Upon coming in again they decided to admit him and do some testing. The doctors noticed right away how dark skinned he was. They suggested Addisons disease but the test took about 5 days to complete and they kept him in the hospital then. He was finally diagnosised with Addisons. At that time Bradley had only been to visit him at the hospital once because he was in school and had been sick as well. Therefore the doctors never saw Bradley, but they never asked about our other children either,or even suggested something as unknown and horrible as ald.

Fast forward to fall 2002 Bradley started having behavior issues. He was a fabulous kid. He was high energy, loved to do sports loved the acheive. Always striving the be the best at everything. He was just born that way! I tell you the truth. He walked at 8 months old because HE wanted to. He loved sports and I have no doubt that if we lived in CA,him and Evan would of been buddies from all the sports they did together! He taught himself to rollerblade at 4 and would play in hockey in the streets with kids twice his age. He also "conquered" riding his 2 wheel bike at age 4 w/out training wheels. His life was like this. He had to be the best, he was as my husband says "driven". He wanted to start snowboarding, but never got the chance. During fall 2002 we had many test done, psychological, hearing, etc. He was doing some weird stuff that our doc couldnt explain and scheduled us to see a neurologist and eye doctor. We went to the eye doctor in Feb 2003 and she said "I dont know why but your son cant see, his eyes are fine you need an MRI right now". We left there scared to death and went to the hospital for an MRI.
I remember thinking as we sat there, this is a waste of time, here is my beautiful son sitting right here with me and we are laughing and playing while we wait, this is going to be nothing. WRONG. Several days later on Feb 14 Valentines day of all days (Bradley turned 9 on the 13th) we were in the neurologist office hearing him tell us that Bradley had ald and would probably die, and that Gabriel also had ald, and that Devan had a 50% chance of having it also. There was no cure. Devastation, upon devastation.
I went home that day and we told our parents, I took Bradley to school as he did not want to miss his Valentine's party (It was his last)!
We eventually found MN university and flew there. Me, the boys (all 3) and my mother in law. My husband stayed back to keep working to keep our insurance. We went though what seemed like weeks of testing and finally had a conference with the docs and me. Just me alone. It was terrifying.
They told me that Gabe needed an immediate bmt, they Devan didnt have ald, and that Bradley should not have a bmt but they would do an experimental treatment. Although the bmt for Bradley was our choice. It was a horrible place to be, to have to make a decision for your son like that. The first of many.

We chose the transplant for Gabe, and the experimental treatmetn for Bradley. We couldnt imagine Bradley being unable to be Bradley, run, play, do sports, be his beautiful self so we had to try something. They started treatment in March 2003. Bradley on one floor, Gabe on another and Devan at RMH. We would rotate between me, my mother in law and my husband who drove up. It was terrible, as a mother I wanted to be with all of them and they all wanted me. Bradley immediately got hives, and very sick and bloated from the treatment. We noticed immediate deterioration in him, but still had a small candle of hope.
Gabriel started on the meds pre transplant and was ok. By the next week when radiation started he was deathly ill. He would go to radiation hungry in the am and wanting to eat something but by the time he got back he was too ill to eat and wouldnt want anything. It was like that cycle for days. It was the saddest thing to see this little 5 year old boy go limp in my arms because of the pre-meds and see the docs lay his little body of the floor to receive the radiation. Heartbreaking. Meanwhile Bradley was still in his room becoming more agitated as we tried to keep him comfortable and content.

My husband sat with him one night and he thought Bradley was asleep and whispered to him "Bradley I am proud to be your daddy". A few seconds later Bradley raised his head and said "Dad, I am proud to be your son". Its a priceless moment that my husband cherishes as I do too. I cry as I write it.
Finally Gabriel's transplant day arrived. Devan was a God send with his tissue matching as good as a twin they said!! I dont know but I know it was a God thing. On that day, I had all 3 of my boys in the hospital in seperate rooms, Devan was just 3 years old.
The transplant went good. We were sure both Bradley and Gabriel could beat ald. We were sure they would be the ones, the success story!!
Early on, Gabriel unknown to us was exposed to chicken pox at rmh. This might not seem like nothing but with zero immune system, we were worried. They gave him some meds and praise God he never developed it. He never had GVH because of his brothers good match. He still suffered mightly with sores in his esophagus and stomach due to the radiation, he had diarrhea constantly. He was so weak. He eventually got some infection in his lungs that gave him high temps, in and out of hospital, they biopsied but could never find out what it was, but after much medication he over came whatever it was. All along the way we had noticed he couldnt see things as usual. At first they told us it was due to the meds, but eventually we faced the fact that most his vision was lost during transplant. His transplant was considered successful.
Bradley on the other continued to decline. He gained 30lbs and was miserable. He became frustrated with life, he was angry, we did whatever we could to please him and keep him comfortable. They told us as first that the disease had been halted via MRI, but the very next month they told us it was active again. It was very visible to us in his school work, speech, and general attitude. There are truely no words to describe watching the one you love, your child, the one you carried in your belly for 9 months of anticipation, deteriorate before your eyes! Pain, pain, pain. All my dreams laid down, all my dreams crushed for my sons.
Eventually we went home to IN. It was a bittersweet homecoming. We were glad to be at home again but we knew we were coming home for Bradley to die, and with unknown obstacles for Gabriel.

We came home in July 2003. At first Bradley stayed about the same as he had been in MN.
My other two sons had learned to play together very well as much of my time was devoted to Bradley. His school friends visited and we all talked of his return to school when God healed him. Knowing it wasnt going to happen but hoping! We did physical therapy and occupational therapy for the boys. We tried to keep Bradley as mobile as possible. They were granted a make a wish, but I just couldnt, couldnt do it. I couldnt celebrate in the midst of all this pain.
We did local things for Bradley to enjoy while he could and he did get a local "wish". It was like Christmas in September. He asked for a bunk bed and got it along with lots of toys and many gifts for the other boys as well. It was very generous and made our day.
In November he really took a turn, I remember Gabe having his birthday and getting one of those powerwheels jeeps. Bradley would run and chase Gabe and Devan on it, holding the back. He would fall down some and had trouble seeing them, he was drooling very badly. He began to fall alot.
Christmas came and we had a 48 hour prayer vigil with thousands of people praying. He continued to worsen. He couldnt support his own weight which was back down to his normal 70lbs. His little hands were turned in and he couldnt hold anything. (even now when I see a child with their hands like that, it twist my heart!), he had trouble swallowing food.
My son couldnt see, walk, talk , or do anything for himself. He was wearing diapers, I was taking care of him day and night, it was literally killing me emotionally. I didnt know how much more I could take. My husband unknown to me was planning on killing himself. I generally cried myself to sleep, and was just in a state. I didnt want to get out of bed, but had no choice, my son needed me. Sleep was my only escape from hell.
One thing, Bradley was still able to hear (a miracle). He would listen to his favorite movies and laugh at the funny parts.
I was the only one Bradley wanted, not even his Nanny (gma) who had helped and who Bradley loved so much would do. I could still communicate with him, and I blended all his food. We were approaching a point where we would have to decide about a feeding tube. We had hospice coming. I prayed and prayed about the feeding tube. I didnt want him to lie in a bed for years on a feeding tube when he could go free with Jesus, but how could I NOT put him on one? How do you make these decisions for your CHILD???
It was 2 days later, he died and I never had to make that horrific decision. He died at home, on morphine, on Feb 27th 2004. His brothers and loved ones were present. I will NEVER forget it. I watched my baby take his first breathe and I watched him take his last! Its absolutely unbelieveable. I had whispered in his ear while he lay there unresponsive, that when the angels come for you son, go, go dont ever look back! He went.

About a hour before that happened, my son Gabriel who is legally blind walked into the living room where Bradley was laying on the couch and asked his dad, whose that man standing next to Bradley? We said, what man. He pointed and said that man right there next to Bradley! We couldnt see anyone, but I KNOW he was there. I share this to say, we dont understand, but God's plan is perfect. He NEVER makes mistakes, and Bradley was no mistake!
It has not been easy, I still have anger at God although I have worked through some with Christian counselors and friends. I still suffer from depression as does my husband, we feel we dont have a future. My husband has said many times the only reason he is here is for Gabriel and Devan. Bradleys death has changed us all. Devan is no longer the baby of the family, he is the big brother for his visually impaired older brother. We have drawn closer as a family and closer to God, but realistically we deal with this daily!
I hope this wasnt too long, but thats it in a nut shell, that's not nearly the day to day as you must now know. I feel that talking to other ald moms is somehow a healing on a wound that will never heal. I wish ald on no one and want to offer any support, help, or a listening ear. Sending all hope and love to you Gina and family.
Christie Smith (written October 31, 2007)

Ode to ALD

Ode to ALD
By Father of ALD children, Kevin O’Toole

I am referred to as rare but am I, I strike 1 in about every 18,000 to 20,000, these stats depend on the source!

Ignore me, continue on in your unaware bliss! I win!

Spreading my name and what I can do!
Don't do this you may give one of my victims or their family a clue!

Some say perhaps when your child is born is when you should test,
This may hold true only if you are aware of me, early detection is best.

It is because of me their young man has to take an array of medicines at various time throughout the day.

It is because of me they had to endure a bone marrow transplant with their son.
It was either that or allow me to fully ruin life's run.

I have caused many parents to ask, why?

Perhaps, one day a cure for me will come along, but not if you continue to ignore my existence.

I am not a myth, continue the thought process of ignorance is bliss.
I will go one taking all or portions of young boys lives, one by one!

I do not discriminate, your ethnicity means nothing to me!

I am ADRENOLEUKODYSTROPHY! (ALD)

Knowledge is power, empower yourself with the knowledge.
Empower another by sharing your knowledge.
Every person in this world needs to know about ALD!

Please show your support in educating others about this horrific monster of a disorder that has already claimed the lives of one to many adolescent boys. Learn the word ADRENOLEUKODYSTROPHY, learn the meaning of the word, learn more about the disorder.

Hannah honors Evan and Caroline with her Locks for Love!!

When we first came to know you and your story, we shared it with our 2 younger children (our older one plays water polo which is how we got to know you and Evan)) and when we shared it with my little one’s, my daughter was absolutely taken by Evan. She had already wanted to cut her hair and decided all by herself that she wanted to donate it to Evan and Caroline. (She already knew of Locks of Love from someone else) So, off we went to have a “special girl’s day” to Salon Bamboo and she had almost 16 inches cut off her hair and donated it in the name and honor of Evan Cousineau and Caroline Harmon.

I realize that they may never get to use the hair however, I was so proud that my daughter is only 5 and she did such a selfless thing in honor of someone else. She prays daily and even reminds the family that Evan needs to be included in our prayers. She asks us for updates and personally, I think she has a crush on him because she always tells me how “cute” he is, lol! So anyway, here are a few pictures of her before, during and after the Locks of Love donation process!

I would have forwarded the pictures to the Harmon’s however I didn’t have their email address.

May God bless you and keep you always,
Kimberly (and Hannah)

Honoring Evan for their 30th Wedding Anniversary

My cousin's Iggy and Ena are celebrating their 30th anniversary and in lieu of gifts, they are asking for donations to Evan and another young boy fighting for his life, CB dominicramos. I love that people are able to put life into perspective and while they celebrate their long lives together, they don't forget those that have not or may not have the same opportunity for that same thing. Love to you both and congratulations and blessing for another 30 plus years together.

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.