Education Book Review
with Chronic Illness
experiences can be as daunting for a parent as raising a child
with a chronic illness. When that illness is hemophilia, the challenge
quotient gets ramped up considerably. The specter of a child having
potentially life-threatening bleeds, figuring out how to allow
that child to enjoy childhood’s ordinary moments and milestones,
and confronting one’s own anxieties is potentially a minefield
fraught with scary missteps.
Fortunately for the relatively few parents who have children with
hemophilia, a blood clotting genetic disorder that affects about
17,000 people in the United States, Laureen A. Kelley’s informative
and useful book should help them navigate successfully through
As the mother of a hemophiliac son, as well as two younger daughters,
Kelley manages to be both reassuring and realistic. She doesn’t
shirk from describing, sometimes in painstaking detail, the medical
procedures that hemophiliacs endure or how to manage complications
that may occur—but she does so in a brisk, chatty tone that conveys
the unflagging message that parents don’t have to be afraid, and
that they can raise a happy and well adjusted child. There’s a
particularly engaging photo gallery of children with hemophilia,
doing everything from karate and baseball to swimming and scouting,
as a visual message that hemophilia doesn’t have to prevent a
child from living as normal a life as possible.
As Kelley says, “Your child can have solid, healthy self-esteem
despite hemophilia—solid enough to handle life’s joys and disappointments.”
While Kelley never shortchanges the importance of managing the
illness through preventive measures (like removing coffee tables
with sharp edges, putting padding around the family fireplace,
keeping sharp silverware at the back of the dishwasher, having
a child wear a protective helmet when he’s learning to walk, making
a child wear a MedicAlert bracelet ) she is also emphatic about
being confident that a child can participate in sports, summer
camp and other activities.
What Kelley does particularly well is present her information
in a cogent and easily digested form that skillfully combines
intimate anecdotes from other parents of hemophiliacs with scientific
data and end-of-chapter summaries for quick reference. With its
ample appendices listing everything from books and magazines,
targeted towards parents and children; web sites; advocacy organizations;
hot lines, and even sources of possible college scholarships,
the book’s self-help features are clearly spelled out.
Kelley is also quite resolute about the need for parents to educate
themselves about the disease and its treatments so that, in turn,
they can be effective advocates for their child , whether dealing
with emergency room personnel, school nurses, or even other family
members and the parents of their child’s friends.
Especially useful is the chapter on schools, which provides very
specific strategies on how a parent can reassure classroom teachers
and other school personnel about the needs of a hemophiliac child.
Kelley cautions parents to be alert to any signs that a teacher
might be over-protective of a hemophiliac student, or in some
way singling out that child in a way that might be harmful to
his interactions with peers.
Kelley celebrates the role of the school nurse in helping a child
with hemophilia thrive in school, and recommends that parents
become respectful partners with the school nurse. She also recommends
that parents do their part by informing school personnel whenever
a child has to be absent for an extended period of time because
of the illness, and be sure that arrangements are made for tutoring
in school work so that the child doesn’t fall too far behind his
This is a valuable resource for anyone who has a child with hemophilia,
or whose professional lives bring them in contact with these children.#
Rosenberg is a freelance writer and editor specializing in educational
Education Update, Inc., P.O. Box 20005, New York, NY 10001. Tel:
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the publisher. © 2001.