LISBON – A look inside Timothy Wood’s discombobulated room
and one would suspect he’s a typical teenage boy. Elvis Presley posters line his
wall, collectible dragon figures hang from a chandelier on his ceiling, and
barely any trace of his floor can be observed amid the clutter. Unlike most
teens, however, this somewhat quiet 17-year-old is unable to experience many
other joys outside of his room and home.

Wood was born with hypoplastic
left heart syndrome (HLHS), a condition where the left side of the heart is
underdeveloped and the right side of the heart is overworked. To treat the
condition, Wood underwent a series of five operations before age
1.

Although he continued to be weaker than other kids, the surgeries
helped him live a semi-normal life until his heart began to fail at 14. Wood is
now in need of a heart transplant.

Unfortunately, there are no surgeons
in Maine certified to perform heart transplants on those under 18. Wood has
traveled to two hospitals, one in Boston and one in New York, to find a doctor
willing to perform the transplant.

Doctors at Children’s Hospital in
Boston refused to perform the risky procedure, according to his mother, Jean,
while Presbyterian Hospital in New York agreed to take the risk, giving Timothy
a 75 percent chance of survival. However, continuing logistical problems between
Timothy’s insurance provider and the hospital have prevented the surgery from
occurring.

Even though Timothy has just 10 months to go before he turns
18 and becomes eligible to receive a transplant in Maine, his family, worried
about his condition, continues to look for an out-of-state medical center
willing to perform the transplant that his insurance provider will
cover.

While he waits, Timothy takes a host of pills each day and lives
on an intravenous tube that delivers medication to ensure proper levels of
oxygen traveling to his heart and vital organs. A nurse visits the family home
three times a week and Timothy visits Central Maine Medical Center on a
bi-weekly basis to have his blood work checked. He has stopped attending school
and his mother has been forced to stop working to care for him.

“There
are restrictions as to where he can go. He always has his cell phone on.
Sometimes he can walk, but he gets easily winded, so he usually takes the
scooter,” Jean says.

HLHS, which affects two out of every 10,000 babies
born in the United States each year, has left Timothy with a flood of
frustrations. When his condition worsened three years ago, he was forced to give
up boxing and weight lifting. Water retention from kidney failure, a side-effect
of the condition, caused him to gain weight. And, “I don’t have friends. It can
get kind of boring in the house,” he says.

The 17-year-old’s list of
hopes is simple and short. He’d like to learn how to drive, be independent and
see his niece grow up. The list of side effects he has acquired from having
hypoplastic left heart syndrome and the medications associated with treating the
condition is much longer. According to his mother, Timothy has asthma,
depression, scoliosis, acid reflux disease and a learning disability, which she
suspects is a result of Timothy receiving large amounts of anesthesia during his
surgeries.

Standing before a table in his living room, Timothy asks,
“Have you seen Rambo?” In his hand was a unique all-purpose knife resembling the
one used by Sylvester Stallone in the movie. The teen enjoys collecting
different types of knives, “all different shapes and styles,” his mother said.
She shares that her son still also enjoys sitting beside a fire in the
summertime and, “I like to fish,” Timothy added.

Reflecting on their hardships, Jean Wood concedes that
although she feels frustrated and helpless in this situation, she is currently
focused on taking things day-by-day. “We’re just hoping to get help. Kids don’t
die before their parents,” she says.

Timothy is not afraid of death, she
adds, but, “he’s not willing to give up yet.”


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