Tuesday, October 3, 2017

My lawyer-brother and his wife, owners of more than $1 million in real estate, seek funds to help cover costs of therapy for their son with Hurler syndrome

Jack Shuler
A Missouri couple who own more than $1 million in real estate have established a GoFundMe (GFM) site seeking money for their disabled son's therapy.

The couple are Gina Hayes and David Neal Shuler, my sister-in-law and lawyer/brother. Is it proper for a couple of such wealth to seek crowd-sourcing funds, especially for their own family needs -- which public records indicate they clearly can pay on their own? I'm hardly an expert on the rules, regulations, and etiquette of crowd-sourcing, so I have a few questions:

* Is GFM meant to directly assist people who own more than $1 million in real estate -- and that doesn't reach their total net worth, which likely includes cash, savings, investments, personal property, real property in other counties or states (the $1 million is just in Greene County, MO), and other assets. Gina and David Shuler might be millionaires several times over. Are they supposed to be directly benefiting from GFM?

* Could this be unlawful, even fraud? I'm familiar with a site called GoFraudMe, which apparently researches possible incidents of crowd-sourcing fraud. Is this something GoFraudMe should look into?

* Most of the cases of fraud that I've read about involve a precipitating event that did not really occur. For example, someone claims to need funds to recover from a house fire, but the fire did not happen. Is it fraud for a couple to seek money for an issue they clearly can cover on their own -- probably with no hardship whatsoever on the family?

The issue for Gina and David Shuler is real. Their 15-year-old son, Jack, has Hurler syndrome, a vicious metabolic disease, which can effect almost every organ system of the body. Here is one online description of Hurler:

Hurler syndrome is a rare disease of metabolism in which a person cannot break down long chains of sugar molecules called glycosaminoglycans (formerly called mucopolysaccharides).

Hurler syndrome belongs to a group of diseases called mucopolysaccharidosis, or MPS.

People with Hurler syndrome do not make an enzyme called lysosomal alpha-L-iduronidase. This enzyme helps break down long chains of sugar molecules called glycosaminoglycans . These molecules are found throughout the body, often in mucus and in fluid around the joints.

Without the enzyme, glycosaminoglycans build up and damage organs, including the heart. Symptoms can range from mild to severe.

Hurler syndrome is inherited, which means that your parents must pass the disease on to you. If both parents carry a nonworking copy of the gene related to this condition, each of their children has a 25% (1 in 4) chance of developing the disease.

That description doesn't do the disease justice. The real thing is much more devastating than that sounds. Hurler, as I understand it, can break down about every organ or system in the body -- eyes, heart, lungs, bones. Until a few years ago, children diagnosed with Hurler were not expected to live long. I think it's safe to say Jack has made it to age 15 largely because he was able to receive treatment from a special clinic for Hurler patients at Duke University.

Gina and David Shuler
(From facebook.com)
I remember hearing about Jack's diagnosis for the first time. I was still working at UAB then, and David called me to see if the university might have any faculty members who worked in the area of Hurler or related diseases. I did some research and discovered Dr. Jerry Thompson, who ran a laboratory at UAB that specialized in conducting bench research and running enzyme testing on potential Hurler patients. Dr. Thompson died in 2013, and this is from an article about his life and work:

If a child was suspected of having a genetic metabolism disease, such as Hurler syndrome, Hunter syndrome or San Filippo syndrome, doctors would send a specimen of blood, urine or cells to UAB for Thompson to examine. Hurler syndrome is a rare, inherited disease of faulty metabolism in which a person cannot break down long chains of sugar molecules called glycosaminoglycans (formerly called mucopolysaccharides). Hurler syndrome belongs to a group of diseases called mucopolysaccharidoses, or MPS.

Thompson was recruited to UAB in 1972 to start a genetic biochemical lab that could test for such diseases.

"That's what Jerry Thompson devoted his career to -- the detection of this disorder," said Wayne Finley, a retired researcher who recruited Thompson as an assistant professor of biochemistry and pediatrics in the Laboratory of Medical Genetics. "He established a laboratory that had national recognition."

I helped arrange for David to speak with Dr. Thompson. As a lab-based researcher and diagnostician, Thompson was not involved in clinical care, and UAB had no such facility. But I feel certain he was at least able to help David better understand Hurler. It's also possible Dr. Thompson told David about the clinic at Duke, although David and Gina might have heard about that from someone else. Either way, it's possible that Jack's bloodwork was sent to UAB, and the diagnosis was made there, via enzyme testing.

Given Dr. Thompson's reputation, it's quite likely that the road to Jack's treatment for Hurler began via lab work at UAB -- and I helped David make a key connection with the institution. What has my thanks been over the years? To be repeatedly stabbed in the back by my lawyer/brother, including being the target of the ugliest and most vile letter I've ever read, about anyone. It must be true that no good deed goes unpunished. I imagine David doesn't even remember how I tried to help him at a time of crisis. (Letter is embedded at the end of this post.) Perhaps attending law school sucks out your soul and leaves you unable to recognize those who've tried to help you in the past.

Here is how Gina describes Jack's situation at the GFM page:

It all started on a cold March day 14 years ago. A doctor told us Jack had Hurlers Syndrome and to take him home and spend our last days with him that he wouldn't make it past two or three years old. He was 13 months old then. Now he's 15 and a half. But only after one stem cell transplant 2 corneal transplants and 50 orthopedic surgeries later. Jack should be a normal teenager running around with his friends and loving this life, but instead he has been using a walker for seven months from 4 surgeries earlier this year from double spinal fusion to double knee surgery. His muscles atrophied and he is weak. He is a miracle and we were told he would never live. Jack goes to a progressive school where he is very smart and liked by all of his peers and friends. He is very smart and extremely funny and witty and shy and emotional and ask questions why this happened to him. I ask those same questions. Jack's story has been incredibly heartbreaking, long, miraculous, disastrous, costly and tearful and joyful. Jack is an incredible fan of baseball, especially his beloved Cardinals. Jack needs your help. He is going to a very costly rehab facility in St. Louis to learn to walk again, build up his strength and start his life again as a teenager. He has a lot of life to live, and give. Please help and please share this story with your friends and family. Thank you.

The page, of course, makes no mention that Jack's parents are millionaires. Should it? Should a campaign like this even be on GoFundMe?

I know one person who believes the answer is no. I was not aware of the GFM page until a "Source Close to the Situation" (SCTS is the official journalism term) notified me about it and expressed a fair amount of outrage that Gina and David would seek money when they had plenty of their own.

We'll have more about SCTS's reaction, plus details about Gina and David's real-estate holdings, in a follow-up post.

(To be continued)


Jesus in Disneyland said...

Who is to criticize anyone else who wants some free money?

How much money someone already has has NOTHING to do with how much more money they think they need!

If people just google "free money" and take the bullshit by the horns they can spend the next ten years getting paid free money!

Anonymous said...

What a disgusting piece of human excrement you are.

You post a picture of a disabled minor child on here and tie him to this article in google searches?

You are warped and broken. There isn't a single piece of empathy in your revolting brain. Shame on you, David! Shame on you for how you've treated your family and what you've become. Your father would be ashamed of you and your mother has been put through enough with your shenanigans.

You are one of the few people who will do society a great justice when you pass on. Your life is one big cautionary tale and story of sadness. Be gone with you.

Anonymous said...

@8:02 --

So, you are saying that just because someone can pull a scam, that means they should do it. Sounds like your moral compass is broken.

legalschnauzer said...

@8:59 --

I figured this would draw a few comments like yours. Yours is interesting for several reasons:

(1) You can't even get my name right;

(2) You take offense at a photo of Jack Shuler, but his parents put the photo on GFM, not me.

(3) You ignore the point of the post -- that wealthy parents are seeking money for medical costs that they surely can cover themselves. Is that ethical? People can come to different conclusions about that question, but you choose to ignore the question altogether.

(4) Jack is my nephew, and I have great empathy for him, and I've done more than just try to feel an emotion; I've gone to work to find a medical expert who could offer insight to the family. My thanks has been the letter you can read at the end of the post. That suggests Jack's parents are both greedy and ungrateful for those who have tried to help them.

Anonymous said...

Hurler Syndrome is a real bitch. I know a family that lost a child to the disease. Their son didn't live anywhere near 15, and most patients do not.

Anonymous said...

@8:58 . . .

What has LS done to his family? From my vantage point, the brother (who now seeks GFM funds) wrote a vicious and prejudicial letter to a judge and then helped ensure Mr. and Mrs. LS would be wrongfully evicted, kicked on the street, and Mrs. LS would get a shattered arm, thanks to Missouri thug cops. If you know of something LS has done to his family -- something that even remotely compares to that -- why don't you share?

Anonymous said...

If you want to be so self-righteous and take such umbrage, why don't you publish your name?

Anonymous said...

Maybe @8:58 didn't make it this far in the post . . .

Given Dr. Thompson's reputation, it's quite likely that the road to Jack's treatment for Hurler began via lab work at UAB -- and I helped David make a key connection with the institution. What has my thanks been over the years? To be repeatedly stabbed in the back by my lawyer/brother, including being the target of the ugliest and most vile letter I've ever read, about anyone. It must be true that no good deed goes unpunished. I imagine David doesn't even remember how I tried to help him at a time of crisis. (Letter is embedded at the end of this post.) Perhaps attending law school sucks out your soul and leaves you unable to recognize those who've tried to help you in the past.

Anonymous said...

Just out of curiosity, has David used some of his millions to help pay for therapy on Carol's arm, the arm he helped caused to be broken?

legalschnauzer said...

@11:40 --

Hah! Sorry, your question isn't funny -- in fact, it's quite profound -- but I couldn't help but have a knee-jerk guffaw when I read it. David hasn't even inquired about Carol's well-being, much less offer to help pay for her therapy, which left us with substantial bills from Cox Medical Center. Carol's arm could have been amputated or rotted off for all the concern David has shown -- and as you say, there is no question he helped cause the bogus eviction that led to her arm being broken. Thanks for the question. The short answer is no, he hasn't even come close to helping Carol or me.

legalschnauzer said...

Forgot to mention that no other member of my family has inquired about Carol's well-being or offered to help in any way. Not one. We haven't even gotten any "thoughts and prayers" from my family. So David has plenty of company when it comes to ignoring suffering under his own nose, in his own family.

Anonymous said...

People scam others daily in this world. I think the real questions are:

Is it a moral act to ask for donations for medical expenses/copays when:

You are a high income earning attorney and a retired federal employee?
You have decent medical insurance?
You don’t support the Affordable Care Act?
When millions of adults and children are uninsured?
When you are able to pay for private schools for your children?
When thousands file bankruptcy every year due to inability to pay medical bills?
When your combined income is most likely in the top 10%?

Also, was the choice to receive specialized out of town physical therapy a personal choice? Is it moral to ask for donations when therapy could have been received locally? Did any donations go to pay for hotel bills/food for a parent rather than medical expenses?
When you aren’t transparent to potential donors about your economic circumstances and ability to pay?

Over $10,000 has been raised.

No one is saying this child hasn’t suffered greatly. The issue is the many children suffering who don’t get any assistance. Those of us who support medical insurance for all see some irony here in that this child also actively supports Trump and Cruz and is against contributing to health care for others less fortunate.

legalschnauzer said...

Here is URL to Facebook post with a more recent photo of Jack, including info about his school -- Greenwood Laboratory -- being involved in fund-raising:


Anonymous said...

@11:52 --

Are you saying Jack's parents support Trump and Cruz -- I figured they were Republicans -- or that Jack himself supports Trump and Cruz? If so, that's sad. I guess a 15-year-old can be pretty politically involved, even though he's not politically aware.

Anonymous said...

The mother is a retired federal employee, and she supports Trump? How dense is this woman? If Trump has his way, she won't have any retirement and no health insurance. The family really will need GoFundMe then.

legalschnauzer said...

The mother is a retired air-traffic controller, and of course, Trump already is trying to privatize air-traffic control. Not sure what that would mean, but it probably would mean reduced benefits and elimination of some benefits, such as health insurance, for those who help keep passengers and crews safe in the air. It also would mean controllers could be fired on a supervisor's whim, with no job protections at all.

The mother doesn't seem to have much concern or empathy for the co-workers she left behind, or those who will practice in her profession for years to come.

Anonymous said...

Dealing with a disabled child can screw around with a parent's brain pretty severely. I've been there and know how it goes.

Anonymous said...

These people live in an upscale gated golf course community. The County assesses their house at $621,000. Zillow estimates it at $720,000. They also own the $70,000 lot next door and multiple rental properties. Would anyone like to donate?

Anonymous said...

You must admit that anyone recently working as an air traffic controller isn't a member of PATCO*.

*Professional Air Traffic Controllers Organization

legalschnauzer said...

@12:05 --

Jack has his own Facebook page, and my understanding is that he has voiced support for Trump and Cruz there.


My guess is that he's mirroring the thoughts of his parents.

legalschnauzer said...

@12:54 --

Not sure I understand what you mean, so I'm guessing readers might be confused, too. Can you elaborate? I, for one, don't know much about PATCO, etc. Thanks.

Anonymous said...

Union Busting 101: PATCO and Ronald Reagan.

The origins of trickle down economics and the war on the middle class lifestyle.


(Bonus old is new again: That time Reagan and the Republicans were worried about Jimmy Carter's $50 billion federal budget deficit and cut taxes on the wealthy to balance the budget- aka the Laffer Curve.)

legalschnauzer said...

@1:04 --

Thanks for the elaboration. I understand the reference now. Very important moment in modern American history. Perhaps the most famous union-busting case ever?

Anonymous said...

Not sending a dime to the GFM associated with your brother's child.

Here is a worthy GFM imo:

Copier Repair Man Hailed as Hero. Credited with Saving as Many as Thirty Lives in Vegas.

Gavrilo Princip said...

You are a despicable piece of shit Roger. Your NEPHEW suffers because he lost in the genetic lottery that we all play at birth. Your brother and sister in law, while they have income and investments, the care their son needs is financially devastating. Sometimes I think I understand your positions and motivations and then you go and do shit stories like this...simply to hurt and humiliate people.
No..I dont give a shit that you only own 1 pair of pants and you live in a flea bag motel with that scag. I dont care she had her arm fucked up by angry cops. I dont care you got fired from the only place dumb enough to employ you in a professional capacity, UAB dodged a bullet when you got canned. ALL OF THESE CALAMITIES ARE A RESULT OF YOUR CHOICES. All of your misery is a result of YOU.

Your nephew made no choices. He only chooses to live. You continue to choose to hurt, humiliate and mock him. FUCK YOU Roger.

The only difference between you and the vegas shooter, since you are both cowards...one shoots from a keyboard the other as a sinper...is the vegas shooter had the decency to end his burden on the rest of us by eating a bullet. Why dont you take a cue??????

legalschnauzer said...


My, you have a bee up your butt tonight. Why is that. You probably don't grasp that your comment is pure nonsense -- sprinkled with profanities that pass for "insight" -- so I will point out a few things for you:

(1) You call me a coward, but you are such a coward that you hide behind a fake name. And you use the name of an assassin. Gee, how clever. Oooh, and scary, too.

(2) If the care has been so financially devastating, why does the family have more than $1 million in real estate, while they take vacations to Europe, CA, UT, etc.?