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)

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