projo.com article from alice

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alice [justagram@...] has sent you a story from projo.com.

(Page at:

http://www.projo.com/eastbay/content/projo_20041211_mngirl11.fb2ea.html)

If you go to http://www.projo.com and register, you can read the updates on this

story. She is now recuperating from her heart surgery but she is diagnosed with

Mito.

Alice

======================================================================

Praying for a new heart

01:10 AM EST on Saturday, December 11, 2004

BY RICHARD SALITJournal Staff Writer

BOSTON -- Sara sits on her hospital bed, an oversized homemade greeting

card in her hands. When she opens it, a heart-shaped piece of paper springs

toward her.

" Here's your new heart so you can get out of the hospital faster, " reads the

message her sixth-grade classmate from Middletown scrawled on the card.

At 11 years old, Sara is all brown eyes, pigtails and smiles -- the picture of

health. But a tube stretches from her arm to the IV pole that never leaves her

side. Every hour it administers a dose of medicine.

Gesturing toward the IV, her mother, Robin , says, " This is actually

keeping her alive. "

But only for a while.

Christmas is only two weeks away, and all Sara really wants this year is a new

heart.

Her own heart was strong enough last year for her to do cartwheels and

walk-overs for her cheerleading squad. But now it is letting her down. Since

Thanksgiving Day, she has been confined to the sixth-floor cardiac unit of

Children's Hospital Boston, where she will remain until she receives a

transplant. Her parents, Robin and , sleep on the floor a few

feet away on an inflatable mattress.

Sara is next in line to receive a heart in this part of the country, but it

must come from someone close to her age, and with the same blood type. Time is

critical.

Not that you would know it from Sara. The perpetually cheerful kid has quickly

developed a reputation among the hospital staff for her ability to lift the

spirits of even the saddest and shiest patients on her floor.

" If they are walking down the hallway, I say, 'Hi,' and I say, 'Do you want to

play with me?' " she says. She visits them in their rooms and corresponds with

them even after they have left the hospital, some with new hearts.

Says her mother, " The problem with her heart is, it's too large. So I say,

literally and figuratively her heart is too large. "

IF THERE IS such a thing as good karma, Sara will get the heart she needs.

After all, it was her mother's willingness to give from her own body that helped

save another child a few years ago.

Journal photo /

Sara and her parents, Robin and , receive a visit from

Amos, a golden retriever that makes the rounds at Children's Hospital Boston.

Sara, a student at Gaudet Elementary in Middletown, has spent much of her

sixth-grade year in the hospital, hooked up to an IV.

Always a believer in organ donation, Robin gave a sample of her blood to

a national bone-marrow registry about nine years ago. She did it to honor the

wishes of a local family whose child died from cancer. About five years later,

she got an unexpected call. Her marrow was a match for a boy from Texas.

First, she gave bone marrow to the boy. A year later, he needed stem cells and

she donated those too. That was four years ago. The boy sends greeting cards

every year during the holiday season to thank for his life. This year he

told her he would be graduating from high school.

Marrow transplants take a toll on even the healthiest donors, but in Robin

's case they are believed to have activated what had been an essentially

dormant ailment in her.

She began experiencing severe digestive problems. She even went a year without

eating, relying strictly on intravenous feeding. She loses vision in one eye and

control of the muscles on her right side when she gets overtired.

" I can't walk far without a wheelchair, " she says.

Doctors told her she had mitochondrial disease, a chronic affliction that

impairs the body's ability to produce energy. Soon after, her son's long history

of mysterious ailments was attributed to the same disease, which is hereditary.

Sara's only sibling, is 21.

Now it is believed that the disease is responsible for Sara's heart problems.

She suffers from restricted cardiomyopathy, a severe and rare form of heart

disease -- the kind that, when undetected, can suddenly kill a young, seemingly

healthy athlete. It has caused parts of Sara's heart to swell and to threaten

the function of other vital organs, her mother says.

Reflecting on the sacrifice she made for the boy in Texas several years ago,

Robin says, " It's a good feeling to know you have saved someone's life. "

Now she is hoping a organ donor will save Sara's. She realizes that parents are

in anguish when they lose a child suddenly and that removing part of their

child's body may seem " barbaric. "

" But you have to say to yourself, 'My child would want to save someone's life,'

" she says.

Even Sara has had some difficulty with the idea.

" It's hard for Sara to accept that someone has to die " for her to live, Robin

says. Her daughter has also asked, " What if the family doesn't think I'm

good enough? "

SARA WAS DIAGNOSED with the heart ailment last May. Initially, her family was

told a heart transplant might be necessary in 5 to 10 years. But further testing

over the summer revealed her heart was far more damaged than had been suspected.

She had to quit the cheerleading squad early in the year and has missed a lot

of classes at Gaudet Elementary School because of trips to Boston. But she, her

family and the hospital staff are trying to make her indefinite stay in the

hospital as comfortable as possible.

The institutional bedding in her room has been replaced by Care Bear sheets and

stuffed animals. The doll and white blanket she has kept since she was a toddler

rest at the foot of the bed. Cards from well-wishers and Sara's artwork from the

crafts room adorn the walls. A tutor comes by to help her keep up with

schoolwork. And classmates and staff from Gaudet have been paying her visits, as

has Amos, a golden retriever that makes rounds at the hospital and that flops

right down on the bed, much to Sara's delight.

" She's remarkable, " says her mother. " She's never said, 'Why me?' She says,

'Why would I want someone else to have this?' "

Meanwhile, back on Aquidneck Island, a large network of friends and family has

been rallying to support the s and to raise money for them. Sara's

grandparents, and Joan Angel, of Portsmouth, are well known in the area,

having operated Colonial Ice Cream and Tremblay's restaurant in the past. The

fundraising effort is being led by Hanos Jr., a Newport firefighter.

's coworkers at Naval Station Newport, where he is a civilian

painter in the public works department, have offered to donate their vacation

time to allow him to stay out of work as long as necessary.

Sara came home for Thanksgiving, but the visit had to be cut short. She could

no longer get by without regular doses of her heart medicine and returned that

night. The family had originally hoped to be home for Christmas too, but there's

no chance of that now either.

Instead, the family, communicants of St. 's Episcopal Church, in Newport,

plans to celebrate the holiday at the hospital with relatives. And pray for a

new heart.

Reporter Salit can be reached at or by

e-mail at

rsalit [at] projo.com

Fundraisers aimed to offset costs

A campaign has begun to raise $65,000 to help the family cover expenses

related to Sara's need for a heart transplant.

The effort is being coordinated by the Children's Organ Transplant Association,

a national charity.

Tax-deductible donations may be made in person at any Citizens Bank branch

using account number 16894073. Checks or money orders, payble to " COTA for Sara

P, " may be mailed to the Children's Organ Transplant Association, 2501 COTA

Drive, Bloomington, IN 47403. For more information, visit the charity's Web site

at

www.cota.org.

Tonight, a spaghetti dinner will be held in Newport from 5 to 9 at the

Portuguese-American Club on Fenner Avenue. The donation is $10 for adults, $5

for children. It is one of several fundraisers planned over the next few months.

To volunteer in the fundraising campaign, call Hanos Jr. at (401)

847-0285.

[Guest guest]

alice [justagram@...] has sent you a story from projo.com.

(Page at:

http://www.projo.com/eastbay/content/projo_20041211_mngirl11.fb2ea.html)

If you go to http://www.projo.com and register, you can read the updates on this

story. She is now recuperating from her heart surgery but she is diagnosed with

Mito.

Alice

======================================================================

Praying for a new heart

01:10 AM EST on Saturday, December 11, 2004

BY RICHARD SALITJournal Staff Writer

BOSTON -- Sara sits on her hospital bed, an oversized homemade greeting

card in her hands. When she opens it, a heart-shaped piece of paper springs

toward her.

" Here's your new heart so you can get out of the hospital faster, " reads the

message her sixth-grade classmate from Middletown scrawled on the card.

At 11 years old, Sara is all brown eyes, pigtails and smiles -- the picture of

health. But a tube stretches from her arm to the IV pole that never leaves her

side. Every hour it administers a dose of medicine.

Gesturing toward the IV, her mother, Robin , says, " This is actually

keeping her alive. "

But only for a while.

Christmas is only two weeks away, and all Sara really wants this year is a new

heart.

Her own heart was strong enough last year for her to do cartwheels and

walk-overs for her cheerleading squad. But now it is letting her down. Since

Thanksgiving Day, she has been confined to the sixth-floor cardiac unit of

Children's Hospital Boston, where she will remain until she receives a

transplant. Her parents, Robin and , sleep on the floor a few

feet away on an inflatable mattress.

Sara is next in line to receive a heart in this part of the country, but it

must come from someone close to her age, and with the same blood type. Time is

critical.

Not that you would know it from Sara. The perpetually cheerful kid has quickly

developed a reputation among the hospital staff for her ability to lift the

spirits of even the saddest and shiest patients on her floor.

" If they are walking down the hallway, I say, 'Hi,' and I say, 'Do you want to

play with me?' " she says. She visits them in their rooms and corresponds with

them even after they have left the hospital, some with new hearts.

Says her mother, " The problem with her heart is, it's too large. So I say,

literally and figuratively her heart is too large. "

IF THERE IS such a thing as good karma, Sara will get the heart she needs.

After all, it was her mother's willingness to give from her own body that helped

save another child a few years ago.

Journal photo /

Sara and her parents, Robin and , receive a visit from

Amos, a golden retriever that makes the rounds at Children's Hospital Boston.

Sara, a student at Gaudet Elementary in Middletown, has spent much of her

sixth-grade year in the hospital, hooked up to an IV.

Always a believer in organ donation, Robin gave a sample of her blood to

a national bone-marrow registry about nine years ago. She did it to honor the

wishes of a local family whose child died from cancer. About five years later,

she got an unexpected call. Her marrow was a match for a boy from Texas.

First, she gave bone marrow to the boy. A year later, he needed stem cells and

she donated those too. That was four years ago. The boy sends greeting cards

every year during the holiday season to thank for his life. This year he

told her he would be graduating from high school.

Marrow transplants take a toll on even the healthiest donors, but in Robin

's case they are believed to have activated what had been an essentially

dormant ailment in her.

She began experiencing severe digestive problems. She even went a year without

eating, relying strictly on intravenous feeding. She loses vision in one eye and

control of the muscles on her right side when she gets overtired.

" I can't walk far without a wheelchair, " she says.

Doctors told her she had mitochondrial disease, a chronic affliction that

impairs the body's ability to produce energy. Soon after, her son's long history

of mysterious ailments was attributed to the same disease, which is hereditary.

Sara's only sibling, is 21.

Now it is believed that the disease is responsible for Sara's heart problems.

She suffers from restricted cardiomyopathy, a severe and rare form of heart

disease -- the kind that, when undetected, can suddenly kill a young, seemingly

healthy athlete. It has caused parts of Sara's heart to swell and to threaten

the function of other vital organs, her mother says.

Reflecting on the sacrifice she made for the boy in Texas several years ago,

Robin says, " It's a good feeling to know you have saved someone's life. "

Now she is hoping a organ donor will save Sara's. She realizes that parents are

in anguish when they lose a child suddenly and that removing part of their

child's body may seem " barbaric. "

" But you have to say to yourself, 'My child would want to save someone's life,'

" she says.

Even Sara has had some difficulty with the idea.

" It's hard for Sara to accept that someone has to die " for her to live, Robin

says. Her daughter has also asked, " What if the family doesn't think I'm

good enough? "

SARA WAS DIAGNOSED with the heart ailment last May. Initially, her family was

told a heart transplant might be necessary in 5 to 10 years. But further testing

over the summer revealed her heart was far more damaged than had been suspected.

She had to quit the cheerleading squad early in the year and has missed a lot

of classes at Gaudet Elementary School because of trips to Boston. But she, her

family and the hospital staff are trying to make her indefinite stay in the

hospital as comfortable as possible.

The institutional bedding in her room has been replaced by Care Bear sheets and

stuffed animals. The doll and white blanket she has kept since she was a toddler

rest at the foot of the bed. Cards from well-wishers and Sara's artwork from the

crafts room adorn the walls. A tutor comes by to help her keep up with

schoolwork. And classmates and staff from Gaudet have been paying her visits, as

has Amos, a golden retriever that makes rounds at the hospital and that flops

right down on the bed, much to Sara's delight.

" She's remarkable, " says her mother. " She's never said, 'Why me?' She says,

'Why would I want someone else to have this?' "

Meanwhile, back on Aquidneck Island, a large network of friends and family has

been rallying to support the s and to raise money for them. Sara's

grandparents, and Joan Angel, of Portsmouth, are well known in the area,

having operated Colonial Ice Cream and Tremblay's restaurant in the past. The

fundraising effort is being led by Hanos Jr., a Newport firefighter.

's coworkers at Naval Station Newport, where he is a civilian

painter in the public works department, have offered to donate their vacation

time to allow him to stay out of work as long as necessary.

Sara came home for Thanksgiving, but the visit had to be cut short. She could

no longer get by without regular doses of her heart medicine and returned that

night. The family had originally hoped to be home for Christmas too, but there's

no chance of that now either.

Instead, the family, communicants of St. 's Episcopal Church, in Newport,

plans to celebrate the holiday at the hospital with relatives. And pray for a

new heart.

Reporter Salit can be reached at or by

e-mail at

rsalit [at] projo.com

Fundraisers aimed to offset costs

A campaign has begun to raise $65,000 to help the family cover expenses

related to Sara's need for a heart transplant.

The effort is being coordinated by the Children's Organ Transplant Association,

a national charity.

Tax-deductible donations may be made in person at any Citizens Bank branch

using account number 16894073. Checks or money orders, payble to " COTA for Sara

P, " may be mailed to the Children's Organ Transplant Association, 2501 COTA

Drive, Bloomington, IN 47403. For more information, visit the charity's Web site

at

www.cota.org.

Tonight, a spaghetti dinner will be held in Newport from 5 to 9 at the

Portuguese-American Club on Fenner Avenue. The donation is $10 for adults, $5

for children. It is one of several fundraisers planned over the next few months.

To volunteer in the fundraising campaign, call Hanos Jr. at (401)

847-0285.