Someone Else's Life

figured it out— she knows. Nana knows— and it’s okay

everything’s okay …

She can finally know Holly—and Jack—and little

Tru

We can finally be family—a real family.

No more secrets, no more lies …

beam at Andy—my Andy—relaxed and bronzed

and happier than I’ve ever seen him, lying on the golden

Thai beach waiting for me, the sun warm on my face, my

heart soaring with the birds wheeling freely high above,

feeling simultaneously like I’m dreaming and like I’ve just

woken up. “Everything’s perfect.”

“Good.” He grins, dropping his book on his towel.

“Ready to dive in?”

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The waves wink at me, glittering with promise as

far as the eye can see—as boundless, beautiful and

fathomless as the future.

“Definitely.” beam, sprinting across the beach, the

wind dancing in my hair, sand flying, shrieking with

laughter as Andy chases me toward the sparkling water,

the crashing waves, the infinite horizon, our footprints

mingling in the sand behind us

554

Author’s Note

Huntington’s disease (HD) is terminal hereditary

disorder of the central nervous system, caused by faulty

(enlarged) gene on chromosome 4. Named after Dr.

George Huntington, who first described the hereditary

disorder in 1872, HD affects as many people as

hemophilia, cystic fibrosis or muscular dystrophy.

Every child of parent with Huntington’s disease is

born with 50 percent chance of inheriting it. If the child

does not inherit the gene, he or she ca

ca

he or she will, at some stage, develop the disease, if he or

she lives long enough. In 1993, the HD gene was isolated

and

direct predictive genetic test was developed. The

test can accurately determine whether

person carries

the HD gene, but not the age at which symptoms will

begin.

Symptoms of HD usually develop between the ages

of thirty and fifty years old, although they can start much

earlier (there is

rare juvenile form) or later and can

differ from person to person, even within families.

Likewise, symptoms can vary from person to person, but

include physical, emotional and cognitive changes.

Physical

changes

often

include

involuntary

movements (chorea), stumbling and clumsiness, difficulty

in speech and swallowing, and weight loss.

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Emotional changes can result in stubbor

frustration, lack of inhibition, mood swings, paranoia,

aggression or depression.

Cognitive changes can include short-term memory

lapses, loss of organizational skills, difficulty multitasking, and loss of drive and initiative—which may be

misinterpreted as laziness.

Symptoms progress slowly over ten to twenty

years, with death usually resulting from complications

such as choking, infections, aspiration pneumonia (caused

by difficulties in swallowing) or heart failure.

Although there are currently about 6,700 reported

cases in England and Wales—and 30,000 in the United

States—probably over twice as many people are affected.

This is because people with HD often hide the condition

due to social stigma, or insurance or family issues, and

because many cases are never diagnosed. Many people

with family history of HD decide not to be tested, since

there is currently no cure, and people with no known

family history of the disease are also often misdiagnosed

with other conditions, such as dementia or depression.

Though no cure has yet been found, since the

discovery of the gene that causes HD, scientific research

has accelerated, and much has been added to our

understanding of Huntington’s disease and its effects.

There are many ways to manage the symptoms

effectively. Medication can be used to treat symptoms

such as involuntary movements, depression and mood

swings, while speech therapy can significantly improve

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speech and swallowing problems, and high-calorie diet

can prevent weight loss and lessen symptoms such as

involuntary movements or behavioral problems.

Useful Websites

Huntington’s disease Advocacy Center:

hdac.org

HDSA National Youth Alliance:

huntingtondisease.tripod.com/nya

Huntington’s Disease Society of America:

hdsa.org

Huntington Society of Canada:

hsc-ca.org

Young People Affected by

Huntington’s Disease, Canada:

ypahd.ca

International Huntington Association:

huntington-assoc.com

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Acknowledgments

Many thanks

To everyone whose lives have been touched by

Huntington’s disease, either personally or professionally,

who have helped me in so many ways, sharing their

knowledge, advice, and personal stories, particularly Matt

Bower, MS, CGC; Susan Walther, MS, CGC; Phillip Hardt;

Stacey Barton, MSW, LCSW; Professor Joseph Boyd

Martin, MD, PhD; Andrea Gainey, MS, CGC; Bo

He

David Harbourne; Bill Crowder; Karen Crowder and

everyone in the HDA; Jean E. Miller; Frank Medina’s wife,

Gloria; Dave Hodgson; Hugh Marriott; Peter Webb and

everyone in the Sussex branch of the HDA; Tracie Tuhill;

Jean Morack; Fred Taubman; Je

Adam Coovadia, MLT (CSMLS), MB, CG (ASCP); Kristin

Kitzmiller; Shelby Duffer, MS, CGC; Kendell Aitchison; and

especially to the exceptional and inspirational Pat Leslie-

Pe

To Colleen Begg for her advice about maternity

wards.

To Miss Higgins for encouraging my writing after

reading my “Owl” poem.

To Ruth Moose for her wonderful writing classes at

UNC, where this story was born, and for introducing me to

the great SCBWI.

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To the Society of Children’s Book Writers and

Illustrators, particularly the fabulous Sara Grant and Sara

O’Co

competition with Working Partners, giving unpublished,

unagented writers chance to climb out of the slush pile

and make their dreams come true.

To my lovely editors, Michelle Poploff, Venetia

Gosling, Jane Griffiths, Amy Black, and Rebecca Short, for

making this dream come true.

To my brilliant and very lovely agent, Je

Andrew Nurnberg Associates Ltd., for believing in

Someone Else’s Life from the moment she first read it—

and then helping me to ditch forty thousand words.

To Chris, for his constant love and support for my

pursuit of this dream, no matter how pe

or how hopeless it’s seemed, and for putting up with me

scribbling away beside him at ridiculous hours, and in the

craziest places.

To my granddad Charles, true gentleman, for his

selfless love of all his family and for always being so proud

of us.

To my lovely sister Caroline, for showing me that

joy and laughter can be found in every single day.

To my equally lovely sister Je

humor, courage, and selflessness whilst proving that while

life may not follow the route you pla

with it that counts, for sometimes the greatest happiness