 |
Gift from Musette and Allen Morgan Creates Foundation for the
Study of PSC
By Deborah White
“Before they knock me out with medicine at the liver
biopsy, could you show me the needle?" “Is it dangerous
for me to be taking all of these medicines?”
These were two of the many questions Worth Morgan asked his doctor
after he learned in 1997 that he had a rare liver disease. He was
only 10 years old at the time, but he wrote down 26 questions to
ask Dr. Gene Whitington, a pediatric gastroenterologist at Le Bonheur.
“They were pretty amazing questions,” said Dr. Whitington,
who patiently answered every one of them.
Worth was very curious about his disease, called Primary Sclerosing
Cholangitis (PSC). “There was no known cause, no treatment
and no known cure,” said Worth’s mother, Musette Morgan.
Dr. Whitington suggested an aggressive and unorthodox treatment
plan for Worth, and the Morgans agreed. “His parents knew that
he was being treated with something that had never been done before,”
Dr. Whitington said. “They were willing to do something rather
than nothing.”
Now at 17 Worth feels great. A recent liver biopsy showed no signs
of PSC. He is 6 feet 2 inches tall, a competitive tennis player
and a member of the Memphis University School football team. “He’s
a big guy, grown up,” said his father, Allen Morgan. “We
weren’t sure that would happen. It has just been miraculous,”
Musette Morgan said.
The Morgans are grateful for Dr. Whitington’s work and they
want to help other children with PSC. They recently made a substantial
gift to the Le Bonheur Foundation, establishing the Musette and
Allen Morgan Jr. Foundation for the Study of PSC.
The Morgans are concerned that there has been a lack of information
about PSC, a lack of research and no consistency in treatment. Often
the treatment for this fatal disease is a liver transplant. While
children are waiting for a liver transplant, they suffer with such
symptoms as severe abdominal pain, jaundice, weight loss and a profound
lack of energy. “We have to get out front and advertise the
disease so we can find out everything anybody knows about it, and
have other people say what’s worked and what hasn’t worked,”
Allen Morgan said.
“We are grateful to the Morgans for this grant which has allowed
us to set up the foundation for the study of PSC," Dr. Whitington
said. "We want to look at the basic cause of PSC as well as
aggressive new therapies. We know that 60 percent of patients with
PSC will need a liver transplant in less than 20 years and our goal
is to change that. The Morgans’ generosity will give us the
opportunities we need to make strong advances with this disease."
Dr. Whitington is the director of the Foundation for the Study of
PSC and the co-director is Dr. Dennis Black, director of the Children’s
Foundation Research Center. They are developing a Web site, plan
to hire several researchers and have formed scientific and administrative
advisory boards. External members of the scientific advisory board
are Dr. Nicholas LaRusso, a world-renowned adult hepatologist (liver
specialist) from the Mayo Clinic, and Dr. Benjamin Shneider, a prominent
pediatric hepatologist from the Mt. Sinai School of Medicine. Dr.
Black said the foundation is soliciting grant applications and expects
to start research projects by July.
Dr. Whitington would like to have an international symposium at
Le Bonheur to bring people together to talk about PSC and build
enthusiasm for research. “The important part of the research
will come from the basic study of the disease,” he said. “If
it seems appropriate to the advisory boards, we plan to promote
therapy with immune-suppressing drugs including Infliximab.”
Dr. Whitington started giving Infliximab to Worth when he was about
14. It is an immune-suppressing drug that interferes with a chemical
substance from the colon that injures the liver. Worth receives
it by infusion every three months. Infliximab is used to treat Crohn’s
disease, ulcerative colitis and rheumatoid arthritis, but Worth
is the only person Dr. Whitington knows of who is taking Infliximab for PSC. Dr. Whitington believes that PSC is an autoimmune
disease, although it is not generally recognized as such.
Dr. Whitington, a board-certified gastroenterologist, said he is
dedicated “big time” to his busy practice and plans to
continue that along with his work in the foundation. He has been
with Le Bonheur since 1958 and he doesn’t plan to retire. “I’ll
die with my boots on,” he said. “I love my work.”
For Worth, living with PSC has been rocky but rewarding. “It
has been character building,” he said. In sixth grade, he spoke
during awards day at Presbyterian Day School about the courage it
took to cope with his illness. He told his classmates:
“It takes courage if you’re a 10-year-old child and you’re
getting up in the morning knowing that this is your first of four
days of having only liquids so that you can go through something
even more horrifying for a child – surgery. Now that takes
courage to be able not to cheat on the fast. It takes courage to
be able to get up in the morning and go on, and it takes courage
to be able to not give up in school!”
Looking back at that time in his life, Worth said, “There was
no fear. I knew it was going to be all right. It made me realize
the truth of my faith on my own terms.”
Worth feels very fortunate to be receiving a unique treatment for
PSC. And he’s excited about the foundation. “I was really
blessed that I was able to be healed, and through this others will
be able to be healed as well.”
|
|
