Bentley’s Journey - Help cure MECP2
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2 years ago, we were given the worst news of our lives. Our son, Bentley (who was 8 months old at the time) was diagnosed with MECP2 Duplication Syndrome.
The words no parent should ever have to hear,
“This is a life threatening condition.”
“We don't know what the future holds for your son.”
“He'll probably never walk... or talk.”
MECP2 Duplication Syndrome is a rare, progressive neurological disorder that primarily affects boys. Most people with this condition have low muscle tone in infancy, feeding difficulties, poor or absent speech, seizures that may not improve with treatment, delayed development of motor skills such as sitting and walking. Some individuals experience the loss of previously acquired skills (developmental regression). Many individuals with MECP2 duplication syndrome have recurrent respiratory tract infections. These respiratory infections are a major cause of death, with almost half succumbing by age 25.
The life we imagined for our sweet little boy was gone. We were devastated.
Now almost 3 years old, Bentley contends with the challenges of the syndrome everyday - He can not walk unassisted, he displays signs of autism, has feeding issues and is non-verbal. But in spite of these challenges Bentley is a very happy boy. His smile and laugh could light up a room. Over the past year he has learned to communicate using pictures and loves the freedom of using his walker.
THERE IS HOPE - Researchers have identified that the syndrome is reversible and are now developing a treatment, it is anticipated to be 2-3 years away from finding a cure.
100% of the donations will go directly to the MECP2 Duplication Syndrome Fund, to help find a cure for Bentley and all the other children affected by MECP2 Duplication Syndrome.
The words no parent should ever have to hear,
“This is a life threatening condition.”
“We don't know what the future holds for your son.”
“He'll probably never walk... or talk.”
MECP2 Duplication Syndrome is a rare, progressive neurological disorder that primarily affects boys. Most people with this condition have low muscle tone in infancy, feeding difficulties, poor or absent speech, seizures that may not improve with treatment, delayed development of motor skills such as sitting and walking. Some individuals experience the loss of previously acquired skills (developmental regression). Many individuals with MECP2 duplication syndrome have recurrent respiratory tract infections. These respiratory infections are a major cause of death, with almost half succumbing by age 25.
The life we imagined for our sweet little boy was gone. We were devastated.
Now almost 3 years old, Bentley contends with the challenges of the syndrome everyday - He can not walk unassisted, he displays signs of autism, has feeding issues and is non-verbal. But in spite of these challenges Bentley is a very happy boy. His smile and laugh could light up a room. Over the past year he has learned to communicate using pictures and loves the freedom of using his walker.
THERE IS HOPE - Researchers have identified that the syndrome is reversible and are now developing a treatment, it is anticipated to be 2-3 years away from finding a cure.
100% of the donations will go directly to the MECP2 Duplication Syndrome Fund, to help find a cure for Bentley and all the other children affected by MECP2 Duplication Syndrome.
Organizer
Amanda Hann
Organizer
Chatham, ON
