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Infant's death from rare disease gives family a mission
By Angeljean Chiaramida
Staff Writer for the Newburyport Daily News
10/1/05
On July 14, 2004, Melanie Medeiros gave birth to 4-pound, 10-ounce Ava Elizabeth. Born four weeks early,
Ava was beautiful, especially for a premature newborn — she had a full, shiny cap of black hair and a round,
pink face. She was a tiny bundle of joy to add to Troy and Melanie Medeiros' family. Ava never
stopped being that sweet joyful bundle, right up to the moment she died in her mother's arms, on Nov. 20, only
four months later, of Epidermolysis Bullosa.
"She was beautiful," Melanie Medeiros said. "She was, and so sweet. Everyone just loved her. ... She was
never put down. When we weren't there, the nurses, the doctors, everyone loved holding Ava."
Plagued with an illness that forced their child to live in pain, attached to medical equipment through wires and
tubes for her entire earthbound existence, Ava's parents found just holding her took great care because of
EB. The genetic disease causes a child's entire body to be so sensitive, the slightest touch or bump can create
havoc to the skin or internal organs.
As a result of Ava's experiences, her parents, who live in Methuen, and their extended family, which includes
Troy's parents, John and Judy Medeiros of Newburyport, have a mission now. They want to raise awareness
about EB in hopes of finding a cure so other children don't endure what Ava did. To that end, they'll be setting
up a table at various area events, one of which is Newburyport's Fall Harvest Festival next weekend.
That the public doesn't know of EB isn't strange, according to Ava's Web site www.EverlastingButterfly.com,
established by her father in her memory. A rare genetic skin disease, only 1 out of every 50,000 children are
born with EB.
According to Angela Sousa, however, that 1:50,000 ratio isn't as rare as it sounds. Sousa, a biology major at
Merrimack College, works with a Haverhill child suffering with EB. Through DebRA, a foundation dedicated to
EB research, Sousa is also interning with a nurse whose medical specialty is EB. After having her awareness
raised about this disease. Sousa plans to spend her career finding a cure.
"The incidence of EB is almost the same as the incidence of Cystic Fibrosis," Sousa said. "It's not as rare as
people think. The problem is there isn't as much awareness about EB as there is about CF."
It's anonymity makes finding the money for research very difficult, Sousa said, but it doesn't minimize the
disease's impact. With three major types ranging from mild to lethal, EB has symptoms that can be devastating,
Sousa said, and its young victims face a lifetime of suffering and pain.
Ava's Web site holds an enormous amount of information, not only about Ava, but also about ongoing
research. It's intended to be a support for families, discussing nearly every aspect of the disease and
providing many Web links to more sources, like DebRA.
"(With EB) the skin and mucous membranes are so fragile that the slightest touch can cause severe blistering
inside and outside of the body," Troy Medeiros explained. "Currently, there isn't a cure or treatment, with the
exception of daily wound care. .... Imagine bathing in a tub of water and bleach with open wounds. Or not being
able to pick up your child because you might hurt them."
During his daughter's lifetime, Troy Medeiros writes on the Web site, she experienced the loss of her
fingernails, blisters and lesions throughout her body, both externally and internally, surgeries, spinal taps,
blood transfusions and blood clots in her heart and brain that cause seizures and permanent damage. Toward
the end of her life, Ava's heart weakened, and she had to be on a constant morphine drip for the pain. Troy
and Melanie never even had the pleasure of feeding their child, because of the effects of EB.
"She was never able to eat orally," Medeiros wrote, "because sucking created blisters in her mouth and
tongue."
Ava's life and death changed her family's life. One reason the Medeiros family is so dedicated to educating
the public and medical community about EB is that until Ava, even the staff at Children's Hospital were
unfamiliar with the disease. But, they learned about EB through Ava, Melanie Medeiros said, and they lovingly
cared for her. They just couldn't save Ava. No one could, but through research someday other children won't
suffer Ava's fate.
"The fragility of the skin (of EB victims) is often compared to a butterfly's wings," Troy Medeiros wrote, "which
is why children with EB are known as Butterfly Children. Our Ava and all other EB Angels become Everlasting
Butterflies."
By Angeljean Chiaramida
Staff Writer for the Newburyport Daily News
10/1/05
On July 14, 2004, Melanie Medeiros gave birth to 4-pound, 10-ounce Ava Elizabeth. Born four weeks early,
Ava was beautiful, especially for a premature newborn — she had a full, shiny cap of black hair and a round,
pink face. She was a tiny bundle of joy to add to Troy and Melanie Medeiros' family. Ava never
stopped being that sweet joyful bundle, right up to the moment she died in her mother's arms, on Nov. 20, only
four months later, of Epidermolysis Bullosa.
"She was beautiful," Melanie Medeiros said. "She was, and so sweet. Everyone just loved her. ... She was
never put down. When we weren't there, the nurses, the doctors, everyone loved holding Ava."
Plagued with an illness that forced their child to live in pain, attached to medical equipment through wires and
tubes for her entire earthbound existence, Ava's parents found just holding her took great care because of
EB. The genetic disease causes a child's entire body to be so sensitive, the slightest touch or bump can create
havoc to the skin or internal organs.
As a result of Ava's experiences, her parents, who live in Methuen, and their extended family, which includes
Troy's parents, John and Judy Medeiros of Newburyport, have a mission now. They want to raise awareness
about EB in hopes of finding a cure so other children don't endure what Ava did. To that end, they'll be setting
up a table at various area events, one of which is Newburyport's Fall Harvest Festival next weekend.
That the public doesn't know of EB isn't strange, according to Ava's Web site www.EverlastingButterfly.com,
established by her father in her memory. A rare genetic skin disease, only 1 out of every 50,000 children are
born with EB.
According to Angela Sousa, however, that 1:50,000 ratio isn't as rare as it sounds. Sousa, a biology major at
Merrimack College, works with a Haverhill child suffering with EB. Through DebRA, a foundation dedicated to
EB research, Sousa is also interning with a nurse whose medical specialty is EB. After having her awareness
raised about this disease. Sousa plans to spend her career finding a cure.
"The incidence of EB is almost the same as the incidence of Cystic Fibrosis," Sousa said. "It's not as rare as
people think. The problem is there isn't as much awareness about EB as there is about CF."
It's anonymity makes finding the money for research very difficult, Sousa said, but it doesn't minimize the
disease's impact. With three major types ranging from mild to lethal, EB has symptoms that can be devastating,
Sousa said, and its young victims face a lifetime of suffering and pain.
Ava's Web site holds an enormous amount of information, not only about Ava, but also about ongoing
research. It's intended to be a support for families, discussing nearly every aspect of the disease and
providing many Web links to more sources, like DebRA.
"(With EB) the skin and mucous membranes are so fragile that the slightest touch can cause severe blistering
inside and outside of the body," Troy Medeiros explained. "Currently, there isn't a cure or treatment, with the
exception of daily wound care. .... Imagine bathing in a tub of water and bleach with open wounds. Or not being
able to pick up your child because you might hurt them."
During his daughter's lifetime, Troy Medeiros writes on the Web site, she experienced the loss of her
fingernails, blisters and lesions throughout her body, both externally and internally, surgeries, spinal taps,
blood transfusions and blood clots in her heart and brain that cause seizures and permanent damage. Toward
the end of her life, Ava's heart weakened, and she had to be on a constant morphine drip for the pain. Troy
and Melanie never even had the pleasure of feeding their child, because of the effects of EB.
"She was never able to eat orally," Medeiros wrote, "because sucking created blisters in her mouth and
tongue."
Ava's life and death changed her family's life. One reason the Medeiros family is so dedicated to educating
the public and medical community about EB is that until Ava, even the staff at Children's Hospital were
unfamiliar with the disease. But, they learned about EB through Ava, Melanie Medeiros said, and they lovingly
cared for her. They just couldn't save Ava. No one could, but through research someday other children won't
suffer Ava's fate.
"The fragility of the skin (of EB victims) is often compared to a butterfly's wings," Troy Medeiros wrote, "which
is why children with EB are known as Butterfly Children. Our Ava and all other EB Angels become Everlasting
Butterflies."
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