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Click ''donate" to make an online contribution to Rett Syndrome research in honor of Sabrina!
Sabrina is a very loving, adorable, and energetic 5 year old girl. She is the loving sister to
an older brother Richie and a younger brother Vincent. At the age of four, Sabrina was
diagnosed with A-Typical Rett Syndrome with Preserved Speech Variant after 15 months
with a diagnosis of Pervasive Developmental Disorder Not Otherwise Specified (PDD-
NOS, a form of Autism). Rett syndrome is the only autism spectrum disorder with a known
genetic cause.
Sabrina was born a happy baby. She met all her milestones, was cheerful, playful, sang
songs and just enjoyed life. Sabrina’s skills began to slowly slip away so many things slid
under the radar, and loss of skills were dismissed as typical 2 year old or second child
behavior as she was still acquiring new skills. She started displaying sensory issues like
rocking and stomping her feet. Although she had a vocabulary of over 150 words, her
speech didn’t progress from one and two words phrases.
Sabrina suffered from constant gas pains, loose stools, frequent night wake ups,
uncontrollable screaming and fits of laughter at bedtime, many sensory issues, almost no
eye contact, one word utterances and outbursts with all transitions. Between ages 3 and 4
we began to see stereo-typical hand movements typical of Rett’s like finger stacking. Her
walking patterns became odd and her balance was off.
an older brother Richie and a younger brother Vincent. At the age of four, Sabrina was
diagnosed with A-Typical Rett Syndrome with Preserved Speech Variant after 15 months
with a diagnosis of Pervasive Developmental Disorder Not Otherwise Specified (PDD-
NOS, a form of Autism). Rett syndrome is the only autism spectrum disorder with a known
genetic cause.
Sabrina was born a happy baby. She met all her milestones, was cheerful, playful, sang
songs and just enjoyed life. Sabrina’s skills began to slowly slip away so many things slid
under the radar, and loss of skills were dismissed as typical 2 year old or second child
behavior as she was still acquiring new skills. She started displaying sensory issues like
rocking and stomping her feet. Although she had a vocabulary of over 150 words, her
speech didn’t progress from one and two words phrases.
Sabrina suffered from constant gas pains, loose stools, frequent night wake ups,
uncontrollable screaming and fits of laughter at bedtime, many sensory issues, almost no
eye contact, one word utterances and outbursts with all transitions. Between ages 3 and 4
we began to see stereo-typical hand movements typical of Rett’s like finger stacking. Her
walking patterns became odd and her balance was off.
At the age of 3 we began to follow a bio-medical approach in order to help Sabrina
(thanks to reading Jenny McCarthy‘s “Louder Than Words“). She immediately began a
gluten free and casein free diet. Within two weeks she started sleeping through the night.
She began receiving cranial sacral therapy and we had better eye contact and it
lessened her sensory needs. She has been following DAN! (Defeat Autism Now) protocol
for 2+ years with great results. She takes a variety of supplements to help meet
deficiencies in her body such as L-Carnitine, Co-Q10, Fish Oil, Naturally Calm, Tri-Enza
a digestive enzyme from Houston Nutraceuticals, Inc which allows her to tolerate corn &
soy products that otherwise cause major behavioral and stomach problems as well as
works towards healing her gut dysfunction, and many more supplements.
(thanks to reading Jenny McCarthy‘s “Louder Than Words“). She immediately began a
gluten free and casein free diet. Within two weeks she started sleeping through the night.
She began receiving cranial sacral therapy and we had better eye contact and it
lessened her sensory needs. She has been following DAN! (Defeat Autism Now) protocol
for 2+ years with great results. She takes a variety of supplements to help meet
deficiencies in her body such as L-Carnitine, Co-Q10, Fish Oil, Naturally Calm, Tri-Enza
a digestive enzyme from Houston Nutraceuticals, Inc which allows her to tolerate corn &
soy products that otherwise cause major behavioral and stomach problems as well as
works towards healing her gut dysfunction, and many more supplements.
Sabrina attends a full day preschool program that is
fully integrated with an ABA approach. She receives a
variety of services in school, speech, OT, PT in private
and group/classroom settings. Her team at school is
preparing to introduce Assistive Technology to
enhance Sabrina’s speech and give her greater
opportunities to communicate and participate in the
world. She works with an amazing team at school. They
work hard to get the right supports in place to help
Sabrina make the strides we know she is capable of.
She loves going every day to play with her friends.
Privately Sabrina attends a Music & Movement Group,
private occupational therapy and a Sensory Gym with
her friends. She has recently begun singing along to
and doing the movements to “If You’re Happy & You
Know It“! She is under the close watch of two very
amazing physicians - Dr. Omar Khwaja, the Rett Clinic
Director of Children’s Hospital Boston & Dr. Timothy
Buie, a pediatric Gastroenterologist of Mass General
Hospital Boston. Both of whom have helped Sabrina
tremendously over the last year. Without them many of
the gains we have seen would not have been possible.
Lately, she has been paying better attention to tasks
and has been uttering 3-4 word sentences such as
“mama, me eat apple”. Within the last year she started
giving lots of kisses and hugs to her family which
brought tears of joy to our eyes.
When she first was diagnosed with autism at the age of
3 one thing I wished for was to one day have a hug and
kiss from my little angel. Well miracles do happen! We
know these gains are only the beginning as we treat
her body and heal the pathways that are broken.
fully integrated with an ABA approach. She receives a
variety of services in school, speech, OT, PT in private
and group/classroom settings. Her team at school is
preparing to introduce Assistive Technology to
enhance Sabrina’s speech and give her greater
opportunities to communicate and participate in the
world. She works with an amazing team at school. They
work hard to get the right supports in place to help
Sabrina make the strides we know she is capable of.
She loves going every day to play with her friends.
Privately Sabrina attends a Music & Movement Group,
private occupational therapy and a Sensory Gym with
her friends. She has recently begun singing along to
and doing the movements to “If You’re Happy & You
Know It“! She is under the close watch of two very
amazing physicians - Dr. Omar Khwaja, the Rett Clinic
Director of Children’s Hospital Boston & Dr. Timothy
Buie, a pediatric Gastroenterologist of Mass General
Hospital Boston. Both of whom have helped Sabrina
tremendously over the last year. Without them many of
the gains we have seen would not have been possible.
Lately, she has been paying better attention to tasks
and has been uttering 3-4 word sentences such as
“mama, me eat apple”. Within the last year she started
giving lots of kisses and hugs to her family which
brought tears of joy to our eyes.
When she first was diagnosed with autism at the age of
3 one thing I wished for was to one day have a hug and
kiss from my little angel. Well miracles do happen! We
know these gains are only the beginning as we treat
her body and heal the pathways that are broken.
Sabrina shows a great love for people. There is not one person who meets her who
doesn't immediately fall in love with her adorableness! However, in a typical day
Sabrina spends more time trying to adjust to the task at hand than really focusing and
doing hands-on learning. Her body hurts in many ways, confuses her, and doesn't allow
her to focus. It also limits her ability to be social, develop relationships with other
children/peers, and play with purpose. She loves to play with toy phones (usually to call
Chuck E Cheese) and purses, loves to go outdoors, rider her bike, go on her swing,
slide, or just have fun playing with her brothers. She LOVES to visit Chuck E Cheese to
play games and watch shows on their large tv screen.
She would love the chance to better play with her friends socially and typically if her
body wasn't bogged down with gut issues along with the impact of Rett Syndrome that
end up affecting her brain & abilities. She just wants to be healed and cured.
A cure for Rett Syndrome is just around the corner! Research published shows Rett
Syndrome is reversible! Please help raise money in Sabrina’s name to help us reach
our goal and cure Rett Syndrome. Help us make Rett Syndrome the first neurological
disorder to be cured ever! Time to make history!!!!
doesn't immediately fall in love with her adorableness! However, in a typical day
Sabrina spends more time trying to adjust to the task at hand than really focusing and
doing hands-on learning. Her body hurts in many ways, confuses her, and doesn't allow
her to focus. It also limits her ability to be social, develop relationships with other
children/peers, and play with purpose. She loves to play with toy phones (usually to call
Chuck E Cheese) and purses, loves to go outdoors, rider her bike, go on her swing,
slide, or just have fun playing with her brothers. She LOVES to visit Chuck E Cheese to
play games and watch shows on their large tv screen.
She would love the chance to better play with her friends socially and typically if her
body wasn't bogged down with gut issues along with the impact of Rett Syndrome that
end up affecting her brain & abilities. She just wants to be healed and cured.
A cure for Rett Syndrome is just around the corner! Research published shows Rett
Syndrome is reversible! Please help raise money in Sabrina’s name to help us reach
our goal and cure Rett Syndrome. Help us make Rett Syndrome the first neurological
disorder to be cured ever! Time to make history!!!!
A special thanks to our donors:
Bonnie Budd
Erin Killeen
Bonnie Budd
Erin Killeen
