As a special needs parent, I often find myself on “Can Island.” Can Island is an amazing little island where you are able to focus just on what your child can do – his sweet laugh, his cute deliberate crawl, his ability to make any box into a hat.
Unfortunately, as Max approaches his 3rd birthday, I’ve been having to make more and more trips to “Can’t Land.” Can’t Land is where your positivity and dreams go to die. Picture Los Angeles with more standardized evaluations.
By far, the hardest thing for me about being a special needs
parent is those mental comparisons to “normal.”
When I’m on Can Island, the joy of Max is so apparent. But lately, I feel as if I’m one trip to the
park or one birthday party from falling into the despair of “Can’t Land” where
it all just feels so hopeless.
I’ve decided the only way that I can stay positive is to
keep fighting for Max on all fronts. Not
just to make sure he gets the services and care he deserves, but more than
that. If I believe I can fight PBD, each
day feels a little less discouraging.
Over the past few months, we have continued to give it our best shot. Our Tee It Up! golf event was an amazing success raising close to $100,000 for research towards Peroxisomal Biogenesis Disorder (PBD). Two weeks after our event, we took off to Baltimore for another Global Foundation for Peroxisomal Disorders (GFPD) fundraising event (the Ilan-A-Thon 5K). While in Baltimore, I was able to tour the National Institute of Health (NIH) which has partnered with the GFPD to conduct a high-throughput drug screening to see if we can uncover any potential therapies for PBD.
Over the past few months, we have continued to give it our best shot. Our Tee It Up! golf event was an amazing success raising close to $100,000 for research towards Peroxisomal Biogenesis Disorder (PBD). Two weeks after our event, we took off to Baltimore for another Global Foundation for Peroxisomal Disorders (GFPD) fundraising event (the Ilan-A-Thon 5K). While in Baltimore, I was able to tour the National Institute of Health (NIH) which has partnered with the GFPD to conduct a high-throughput drug screening to see if we can uncover any potential therapies for PBD.
Scientific side note for the nerds out there: Essentially,
the National Center for Advancing Translational Sciences (NCATS), a subsection
of the NIH, tests various compounds already approved by the FDA to determine if
any of them have a positive effect on a cell's peroxisomal function.As newly appointed treasurer for the GFPD, I was also invited to attend the Annual GFPD Scientific Advisory Meeting, where PBD researchers from across the U.S and Canada gathered to discuss recent advancements and possible upcoming projects including the use of metabolomics technology, natural history studies, and gene therapy. It was amazing to see exactly where the Tee It Up! dollars raised are going – totally fulfilling, exhilarating and also totally terrifying. It was like one of those dreams where you show up to class and there’s a test, but you haven’t gone to class all semester and they use the word “metabolomics” a lot. (Metabolomics: the scientific study of metabolites present within an organism, cell or tissue).
Now, after things are all over, I realize I was riding on a bit of a “let’s cure PBD” high. As the dust settles, the reality has started to set in a bit. Max is doing great health wise, but the milestones we all want so badly, continue to evade us. And, although we are so much closer than we were even a year ago, we are still a few years and a few million dollars away from making gene therapy a possibility for PBD kids. So I take it day by day, but here is the favor(s) that I ask of you –
Stay, Pray,
and Play.
Stay: We are so
grateful for the support we have received so far, but this is a long
journey. I truly believe that the research we are sponsoring will not just
benefit Max or PBD kids, but society in general. There is so much left to learn about
peroxisomes that when you donate to the GFPD, you are actually helping guide
leading edge medical research that is likely to have many different benefits for many different diseases and disorders. We hope
you will join us in championing this amazing work. #yearoftheperoxisome
Pray: Every single
one of your prayers is appreciated. I
know the first instinct is to pray for a cure, but that is so very far
away. What we really need is strength
and guidance – 2 things that I believe only God can give us.
Play: I know there
are many people that read our story that we’ve never met or who have never met
Max. If you see us out, please introduce
yourself and take a moment to meet Max.
I guarantee you will fall in love and instantly understand why we fight for Max even on our most frustrating days.
Thanks again for your continued support!
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Man enough to handle a pink shopping cart.
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They see me rollin....
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| Laughing with Daddy on the 4th of July |
Last but not least, Max LOVES head rubs.
They're like Pringles - once you start, you can't stop. |
