Hi,
Someone posted the following article at another macrobiotic discussion forum and I feel that it's something that many folks here might also want to know about it and possibly even offer some help:
"HARDWICK - Sky Lloyd looks like a typical 13-year-old boy.
He's not.
He can't ride a bicycle. He can't play baseball. And he can't risk
getting a paper cut.
If he falls off his bike, if he gets hit by a baseball, if he cuts his
finger opening an envelope, Sky could bleed to death.
Sky has a rare and severe form of immune thrombocytopenia purpura - or
ITP, for short - which means his body's immune system is fighting its
own blood, destroying the platelets that allow blood to congeal. Most
people have 140,000 to 400,000 such platelets; Sky has about 1,000. On
a good day, he may have 4,000.
So a paper cut won't clot and scab over. A bruise on the arm from a
baseball won't change color and disappear; it will just get bigger and
bigger and bigger as the blood continues to flow. A simple fall from a
bicycle could cause massive internal bleeding.
"We're always on the edge," his mother, Linda S. Lloyd, said recently
as she sat on the couch in her family's cozy single-story home in
Hardwick and talked about her son's illness.
"It's the unknown," she said. "The `what ifs': What if this happens?
What if that happens? A major trauma, a car accident, a bad fall is a
major risk to his life. Any parent worries. I worry every minute."
Sky's older brother, Zachary, 17, said he, too, worries about his
brother.
"You're always wondering what is safe to do," he said. "Maybe you
shouldn't do this today. Maybe I can help you walk down the steps so
you don't fall. Simple stuff."
Sky, who also suffers from a mild form of Asperger's syndrome, likes
watching basketball on television, particularly the University of
Connecticut's women's team, and the Boston Red Sox. Asperger's
syndrome is developmental disorder characterized by impairment in
social interaction, resulting in restricted and repetitive patterns of
behavior, interests and activities.
The Lloyds first noticed something was wrong with their younger son
when he was about 18 months old. He was covered in bruises and they
didn't know why. They took him to the doctor, who told them their
child had either leukemia or ITP.
Mrs. Lloyd said her child likely contracted the illness when he
received his immunization shot. The waiver every parent signs when a
child is given the immunization shot warns that one in 30,000 children
could be adversely affected.
"You don't think about it," Mrs. Lloyd said, lamenting the seemingly
routine visit to the doctor's office. "But when it's your son, it
really, really, matters."
>From age 2 to 6, Sky underwent more than 50 overnight visits to the
fifth floor of UMass Memorial Medical Center - University Campus. Dana
Lloyd would drive to Worcester to drop Linda and Zachary off at the
hospital at 4 a.m. then drive to Northeast Foods in Auburn, where he
worked as a baker. Linda and Zachary would stay with Sky as he
underwent painful treatments. The IV was particularly painful, Mrs.
Lloyd said, and Sky would scream when it was inserted in his arm.
"I used to watch the machine, and I would imagine each drop from the
IV was the drop that was healing him," Mrs. Lloyd said.
Mrs. Lloyd said she owes a debt of gratitude to the employees of the
5th floor at UMass Memorial Medical Center's University Campus. She
said she also is grateful to the support of Helen Mullen, a clinical
nurse who helped Sky as he underwent seemingly endless treatments.
Dr. Alan Michelson, who specializes in pediatric hematology, is the
founder and director of the Center for Platelet Function Studies at
the University of Massachusetts Medical School. The center is an
international, multidisciplinary collaboration for the study of
platelets and the treatment of rare forms of ITP. The state of the art
research center has treated Sky Lloyd since he was diagnosed with
abnormality in February 1993.
"Sky has a severe form of ITP," Dr. Michelson said. "Accidents that
would be considered routine to a child could be life- threatening to
Sky."
Doctors don't know what causes ITP, which affects about 200,000
children in the United States. It often occurs in otherwise healthy
children a few days or weeks after a viral infection. It is believed
that this infection causes the immune system to lose the ability to
distinguish between the body's own cells and those of invaders. There
is also some evidence that certain vaccines may trigger ITP, but this
occurs in only a small percentage of cases. Why ITP results in some
children and not others who have had the same infection, virus or
vaccine is not known
About a dozen children a year in Central Massachusetts are diagnosed
with ITP, Dr. Michelson said, and only about one in 100,000 suffers
the same form of ITP as Sky.
Some 97 percent of children diagnosed with ITP respond to a variety of
treatments and make a full recovery. Those who do not respond to
conventional treatments have what is called chronic refractory ITP.
Dr. Michelson said Sky has undergone three of the four treatments
designed to cure his affliction. He has taken prednisone, a synthetic
steroid that has shown to increase platelet levels; intravenous gamma
globulin, a liquid cocktail of antibodies that produces a dramatic,
though temporary, increase in platelets; and anti-D, a liquid
concentrate of antibodies derived from human plasma, which produces a
rapid but temporary rise in platelets.
"The count may come up a little, but then it goes back down," said Mr.
Lloyd, who admits frustration and exasperation at physicians'
inability to cure his son. "There's no cure. Every antibody introduced
to his body just sits there."
The fourth treatment, the surgical removal of the spleen, is
successful in 70 percent of ITP cases. Thus far, the Lloyds have been
reluctant for Sky to undergo spleen surgery.
"The research we had done with people who'd had their spleen removed -
a lot of, a great percentage of them, got this disease again three to
six months later," Mrs. Lloyd said. "We didn't want to take that
chance. Sky needs to keep his body parts. The spleen is a very
necessary part of the immune system. We didn't feel it was the right
decision to risk that."
The Lloyds are now opting for alternative treatments that they say
have worked on other children. These include acupuncture, chiropractic
therapy, a macrobiotic diet and physical therapy. They'd like Sky to
attend the Kushi Institute in Becket. The educational and medicinal
facility focuses on helping people recover from illness through nature
and environmental healing.
But Dana Lloyd's insurance, which the family said has been terrific in
covering most of Sky's treatments, will not cover the alternative
methods the family would now like to try. So the family has started a
campaign to raise money to pay for the alternative treatments. They
aren't comfortable seeking donations, they say, but it is their last
resort. They have opened an account in Sky's name at Country Bank for
Savings, 352 Palmer Road, Ware.
"We just want to help Sky," Mrs. Lloyd said."
Last night I called Linda S. Lloyd to find out how Sky is doing and she said the condition is the same as in the story and that if people would like to help with a donation of a check or money order, to please send it to:
The Account For Sky Lloyd,
at the
WAL*MART BRANCH of the Country Bank for Savings,
352 Palmer Road,
Ware, MA 01082
Tel. (413) 967-4099
http://www.countrybank.com/branches_warewalmart.htm
If people would like to contact the Lloyd family, their e-mail address
is
seafairy108@yahoo.com
Thank you, very much.
_||_
Bruce Paine