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The Most Important Thing I've Written In My Life
Rob Novak    


Blog post number Five Hundred Ninety-three.


This is it. It's also the most important thing I've ever written, anywhere, ever. Papers, presentations, proposals, reports, white papers, books, magazine articles, schoolwork, emails, blogs. Ever.

Fair warning, I'm going to ask you for something. Well, two things.

This is an awareness post, and a call to our community (and others to which I belong, I'll be cross-posting) for some assistance for one of our own.

Troy ReimerMany of you know Troy Reimer, SNAPPS senior developer for 9 years, and one of my former instructors. Troy has been a quietly prolific developer (quietly as in, not as much on the social network as on the work), has been a speaker at Lotusphere for 9 years, of course Collaboration University, and various LUGs. He was co-creator of the Quickr Templates, created the JSONreader and JSONwriter open source projects, and has helped countless clients solve some of the most challenging problems and development tasks. Troy's contributions to the community - ours, his, his church, and more - are enormous, and (unlike me) he does not seek the glory, marketing value, or attention. He just gives.

Troy and his wife Emily are the proud parents of four beautiful, vibrant, active children. They've played at my house at Christmas parties, I've visited them at their home, and Troy is late if he leaves at 5:01 during the week to see his kids. He had the two older boys when he started at SNAPPS (of course I'd already known him since before they were born), and then in a twist of fate Emily was pregnant just as they were finalizing an adoption! So they decided to go ahead and adopt young Lucy from China and had young Matthew. That was eight years ago.

Matthew in particular enjoys swimming and is a member of the Ad Astra Area Aquatics swim team in Lawrence, Kansas. He's a bright, energetic boy who has healthy sibling rivalries, a disdain for all the appropriate foods we're supposed to hate as kids, and is particularly happy when daddy gets home from work.

In the times he has been at my home, Matthew has been a dynamo. At SNAPPS Christmas dinners when we have 13 kids in the house, he has always seemed to lead one charge or another up and down the stairs!
A picture named M2

On February 5, Matthew had the flu. And through the night, it kept getting worse.

Only it wasn't the flu.

It was every parent's nightmare.

Matthew was eventually diagnosed with Childhood X-Linked Adrenoleukodystrophy, or "X-ALD" for short. Here's a short excerpt about the condition:

Dr. Gerald Raymond, director of neurogenetics at Kennedy Krieger Institute in Baltimore, said the classic childhood form of the disease occurs between ages 4 and 10. It’s the most severe and affects only boys. Symptoms may include visual loss, learning disabilities, seizures, deafness, fatigue and progressive dementia. The most common are behavioral changes such as abnormal withdrawal or poor school performance.

“There often is a rapid deterioration and often they are left in a vegetative state or die within a year or two years after disease onset,” he said.


There is no cure, but there are limited therapies including a bone marrow transplant, gene therapy and Lorenzo’s oil. Augusto and Michaela Odone developed the oil after their son, Lorenzo, was diagnosed with the disease in 1984. Their story was depicted in the movie,
Lorenzo's Oil.

Raymond said there is significant risk with a transplant, and gene therapy is only being done in Paris and on a research basis.

The entire article in the Lawrence Journal-World can be found here.

If any hope can be found in the face of such news, it was that (after a couple months of research and applications and the ferociousness of parental love) Matthew qualified for experimental study and treatment at the Kennedy Krieger Institute in Baltimore. His MRI was promising, he was still seven years old at the time (barely) and hadn't shown the neurological symptoms -- yet. So in July, Troy packed up his family and went to Baltimore for a week. And they will be doing this at least until Matthew is 13.

Matthew will quite likely require a bone marrow transplant in the future. Baltimore is the new "vacation spot" for the Reimers, if you can call it that. Experimental treatments, specialists, and a very special diet are now lifelong experiences for Matthew and his family. And the expense - beyond insurance - is and will be adding up for years.

So to my requests.

First, Matthew is registered with a bone marrow registry at www.marrow.org and the Reimers, I and all our friends encourage you to register yourself and your family as donors. You must live in the U.S. or Puerto Rico to do this, be in good health, make a commitment to donate if someone needs it, and there is an optional financial donation. Optional. They will send you a kit, you swab your cheek, and send it back. That's all there is to it.

Second, if you have the means, even if it's just a little, please consider donating through PayPal to Matthew's medical expense fund. Defraying these mounting costs will help significantly over the years as all of the unexpected but absolutely critical trips, physicians and treatments are undertaken by Matthew and his family. It's very simple, just visit PayPal.com, click "Send Money" (Family and Friends), choose an amount and payment method, and in the "To" email address type "miraclematt@reimerfamily.org" . Alternatively, I have pasted a preconfigured PayPal donation button below. Just click. This button will have a permanent place on the right very soon.


Thank you for reading.

-Rob Novak



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http://www.lotusrockstar.com/blog/robblog.nsf/d6plinks/RNOK-8LJLGX
Sep 09, 2011
27 hits



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