Hi Wylder Nation!! I feel like I haven’t blogged, I mean really written to you all in a while. Well, I am making up for it today … there are so many amazing things to share with you. Where to start … we have been so busy. We have been working to set up our plan of attack for Wylder Nation in 2013 and getting non-profit status. My oh my, is it complicated. PAPERWORK = YUCK!!! We just have to keep reminding ourselves how important it is to “set it up” properly in the beginning so we can move full speed ahead with GREAT purpose. We also have to remind ourselves to stop and take a breath and listen to the signs around us (they are everywhere). Amazing things and guideness are happening from Wylder and we are taking it all in … plus we keep telling ourselves … “I suppose, if it was easy, everyone would be doing it, right?” It has also been an emotional roller coaster settling back in at home and missing our littest one. I know that is the obvious, but this sort of emotional break down ended up manifesting itself into a wicked worked up cold and drained away many days. But now we are back on the up swing and building a community, setting up a mission and moving forward with great and strong purpose in our hearts once again. Steven and I enjoy talking about our Wylder, his messages and how moving forward we can best support NPA, rare disease … and just plane making our Warrior proud. It has also made us realize how many avenues of “options”there are to help, and how we feel OUR journey could have been better supported so we can help others. That is when I read a few notes from all of you that recommended we get a blog post from Steven … “a voice of a father driven to great lengths for the love of his son. … a synopsis of the struggles you faced with Wylder having a rare disease and what you hope will be different in the future for other children”. BRILLIANT. You all are brilliant. Great suggestion, I only wish I had thought of it myself. Blog post coming from Mr. Laffoon soon (tee hee). WARNING; I am rainbows and butterflies comparatively (ha ha). Steven and I often laugh and joke that if we both journaled about the same day or synopsis … people reading would swear it was 2 different stories. That is totally what makes us work!!
How Wylder has been working his magic … the happings of WN so far;
Because of Steven, we have an incredible relationship with Genzyme. There commitment to patients and our family has just been overwhemling. We got the most exciting news that Phillip (PAUL) Maderia, the head of manufacturing for Genzyme (who Steven met last month), will be running the BOSTON MARATHON in April in honor of our Wylder James. Tears, lots and lots of tears. What a tribute and an honor. Here is the video about what and why genzyme does this. This video is just BEAUTIFUL, absolutely beautiful. http://www.youtube.com/watch?v=t7Qh0JfaFr8 This man and this cause is the essence of HOPE. Lots and lots more coming on this soon and how you can help!! We are over the moon.
Organization of Rare Diseases (NORD) - “Thirty years ago today, President Reagan signed the Orphan Drug Act into law to encourage the development of treatments for the millions of Americans with rare diseases.
The Niemann Pick Disease Foundation also let us know some very exciting news. Steven and I found an article about a year and a half ago and it was filled with HOPE. Hope about research being done for Niemann Pick A in California. Problem was, it was possibly going to be shut down because of funding and the number of children affected by NPA. Well, we just learned it has been re-funded by NNPDF.org because of donations received to the Niemann Pick foundation in Wylder’s name and others. Thank you!!!!! We cannot share details on this yet (because of paperwork) .. so we are just waiting for the go ahead from the National Niemann Pick Disease Foundation … but this is so very exciting!
WN is also joining forces with the Global Genes Project, because “hope IS in our Genes”. Goal/Purpose; building and supporting our rare disease community. We will be collaberating, conference calling, to keep up to date on the happings with research in the rare disease community nation wide. http://globalgenes.org/ (there is not a link from there site to ours as well)
I also found myself needed my kiddo fix. So Monday I headed down to Phoenix Children’s with Hope Kids and passed out Wylder’s books to some Hope Kids in the Hospital. Rewarding!!! Love these kiddos and there amazing parents. I also got to give Wylder’s nurse Rachel a big HUG, as she works at PCH now.
Just this morning we joined TGen and the Phoenix Business Journal for Breakfast conference. At the conference the Commissioner of the Major Leaue Baseball Allan “Bud” Selig spoke, and we listened and asked questions to an amazing panels of doctors and researchers. Dr. Anna Barker. Dr. Paul Keim. Dr. Jeffery Trent and Dr. Daniel Von Hoff. Can I get a “whoot whoot”. Although, I still cannot believe Steven and I understand most of the medical jargon … genome sequencing and improving bench to bedside is our hearts! What it really means to us, to you and to our rare disease community is … HOPE. If I bring myself back to the day we got Wylder’s diagnosis, it seems impossible. When we pulled up to Wylder’s pediatricians office with Wylder coo-ing from his car seat … we saw Dr. Aleck (geneticist from PCH) get out of his car in a full suit and walk into the office to meet up with Wylder’s pediatrician. Our hearts sank … Doctors dressed up in suites are a bad sign. As we walked into the office we were not lead into a regular room, but rather a wood paneled formal office. There they were … across the desk from us with tears in there own eyes … about to give us impossible news. Wylder sat in my lap. We asked if we could record the conversation as we didn’t want to miss a beat about the treatment plan for whatever they were about to unveil. Then I looked down at Wylder and back at the doctors and said “it’s not Niemann Pick A is it?” … “I am so sorry,” they said. IMPOSSIBLE.. The impossible was now not only very possible, it was our reality. Dr Aleck and Dr. Gerlach were so kind and warm …. but in terms of treatment, cures, options … they too were helpless, there was nothing. That was not okay with our family, and so our journey began. That feeling of hopelessness that the medical community did not have anything to offer is an impossible feeling, and one we think no parent or child should face . If there are options and hope then the choice is yours … your family’s decision on what to do or not to do, and that is how it should be. TGen and genome sequencing gives our rare disease community this type of opportunity. So we can say … “this research is happening”, “this holds promise” … and “let us study this”. Each person and disease can be treated as individuals based on there genome.
I just touched on all these things like they are all small happening, but truth is some of them are major. Major, major … like I have to pinch myself that someone amazing is running in the Boston maraton for our Wylder!!! Althought it is overwhelming, emotional at times and we just wish this disease wasn’t our path … it is. And it is a beautiful and purposeful path which we are honored to do the best we can for the cutest, sweetest, littlest one showing us how. Wylder we know you are reseponsible for all of these happenings and we promise to keep listening. You are loved littles … you are loved and making a differnce everyday. xoxo
Thank you to all of you WN Warrior’s that continue to vote daily for the MASK Unity Award. It means so much to us. http://www.maskmatters.org/shannon-laffoon
Lots of WN Updates … Lots!
Posted by January 17, 2013 4 Commentson