“They see a girl who cannot talk, I see a MIRACLE
that doesn’t need words!”
Author Unknown
Introducing ME
My name is Lily Brown, and I am a happy 3 year old. I was born
on January 19, 2009. I weighed 7 pounds, 9 ounces. I was born
completely healthy with a normal delivery.
I live at 15604 Rob Roy Drive in Oak Forest, Illinois. We have
lived here ever since I was born. My room is painted yellow and I
have a Dora crib and lots
of Dora decorations!
I am usually very
happy. I am very social! I
love school and I enjoy
being with my family and
friends. I love being
surrounded by people and
being part of the action.
Visit My Websites:
www.gp2c.org/lilyb
http://www.caringbridge.org/visit/li
lycharlottebrown
My Family
I live at home with my Dad, Mom, and big sister Grace. I also am very close to
both sets of grandparents, and my aunts and uncles! I have a dog named
Marley and 2 cats named Rocky And Rusty.
Dad- My daddy Jon is a union pipefitter
Mom- My mommy Jen teaches 2nd grade
Paternal Grandparents- Grandpa & Grandma (Bob and Char Brown)
Maternal Grandparents- Papa and Nana (Jim and Peggy Bosvay)
Aunts & Uncles:
Uncle Jim, Uncle Jeff and Auntie Laura, Uncle Jimmy and Aunt
Kristy
Cousins:
Benjamin (almost 1)
Me and My Family
I enjoy being with my family. We like to read, dance, sing, and be
together!! I like when they take
camping or to the zoo. I love
going for walks too. I love to
snuggle and give hugs and
kisses! I have a LOT of love to
share!
me
I have my own computer that speaks for me, and I love telling mom
and dad what I want! It’s called a Tobii and I bring it to school with
me.
A Few of My
Favorite Things…
Favorite Toys- toys with music and lights. I need help to play with
them but I DO love them!
Favorite Activities Outside of School- going
swimming, horse therapy, going for walks,
reading stories, watching my favorite shows,
swinging at the park.
Favorite Foods- I can eat just about anything as long as
it’s soft. I really like
watermelon, pasta, and ice
cream.
Favorite TV shows- Dora, Backyardigans,
Wonder Pets, Elmo
Lily’s Story
Lily is a friendly, happy, and loving child. Our journey with Lily
started in January 0f 2009, when she was born. She was an easy
baby who ate well and loved to be cuddled and played with. Lily’s
muscle difficulties became evident after 6 months old. She had
difficulties crawling and was not trying to pull herself up to stand. At
her 9 month checkup we agreed to have Lily evaluated for PT. We
started receiving services through Early Intervention just before Lily
turned 1. Through EI, Lily got PT and Speech twice a week as well
as OT, Developmental Therapy, Nutrition, and Social Work.
By the time Lily was 19 months she started a “hard and fast”
regression and she lost every skill she had. Over that 6 month period
Lily was very irritable, antisocial, and confused. She stopped
responding to us and would have several screaming fits every day.
She would hyperventilate, wince in distress, and began wringing her
hands. It was a very dark time for our whole family as Lily got worse
every day and we could not help her. We truly thought we might lose
her. After seeing many specialists and being hospitalized for days,
we received a clinical diagnosis of Rett Syndrome. Soon after a DNA
test confirmed the result. Lily has an R255X mutation of the Mecp2
gene. We were devastated to hear the news, but quickly made the
decision to stay positive, fight back, and hold our expectations very
high for our little girl!
Lily currently receives PT, OT, Speech, and horse therapy all
once a week outside of school. She regularly sees her pediatrician,
neurologist, gastroenterologist, physiatrist, and other specialists as
needed. Lily had a g-tube placed in October of 2011 after her weight
dipped dangerously low. We use her g-tube several times a day to
supplement her with formula. Weight gain continues to be a struggle.
She also suffers from acid reflux and has been taking reflux meds for
over 2 years.
Lily has never been able to walk independently and has yet to
take steps on her own, though she has the drive and the muscle tone
to hopefully do so someday. She’s lost most fine motor skills, and
cannot eat/drink without assistance. She needs someone to feed her
and hold her cup. Her speech/communication is the greatest
struggle, as is with most girls with Rett Syndrome. Lily can use eyegaze and at times hand movements to communicate, and continually
shows us that she is able and motivated to communicate.
“Not being able to speak is not the same as not
having anything to say!”
“Just because I don’t talk doesn’t mean that I don’t
understand!”
What CAN Lily Do?
Mobility- Lily is currently working on standing independently, crawling,
and pre-walking skills. She can stand with support and can take
steps when you move her legs through the motions. Lily wears AFOs
on her feet and they are needed for stability anytime she is standing
or practicing walking. We transport Lily in her wheelchair stroller or
by carrying her.
Lily can “bunny hop” to get where she wants to go, but usually only
when she is highly motivated, otherwise she generally stays where
you sit her. She is able to sit up well on the floor or in a chair with
supervision.
Feeding Needs- Lily has no food allergies. She generally has a good
appetite and she will eat almost anything, as long as it’s soft or
mashed. She cannot chew anything hard and that presents a
choking hazard. She can drink fluids from a straw-style sippy cup if
it’s held for her. Drinking is difficult for Lily and we supplement her
with formula via her g-tube to keep her hydrated. Lily only drinks a
few ounces a day by mouth but we are working hard to maintain that
skill and hopefully increase her liquid intake. We usually offer Lily
juice or milk rather than water for the extra calories. Lily continues to
practice self finger-feeding, but she really needs to be fed by
someone else in order to get a full meal or snack.
Fine Motor- Girls with Rett Syndrome have severe apraxia, making all
muscle movements difficult. Lily has trouble coordinating her muscle
movements in every way. Even the smallest tasks, require a lot of
effort and time to plan and fulfill. She can pick up some objects easily
and quickly, but other times, it may take a great deal of time. We are
working on her ability to give items and functionally play with toys.
She is often content to sit and watch others play and she requires
prompting and some hand-over-hand assistance to actually
participate in activities and play with peers. She often drops her toys
or items. Her functional hand use has been replaced with handmouthing and hair twisting. Her mouthing and twisting gets in the way
of her ability to use her hands, so we often use arm braces on one or
both arms. Hand-wringing is an involuntary movement and Lily
simply cannot stop. Sometimes she welcomes the braces to have a
break from this negative habit.
Communication- Lily is a very smart, bright little girl, but struggles to
communicate effectively on her own. We use several types of
communication aids and have seen impressive things. It’s important
to remember that her receptive language is strong! She understands
everything! Secondly, she WANTS to communicate! Girls with Rett
Syndrome talk with their eyes most effectively because it is easiest to
control their eyes rather than their hands or mouths. Lily is learning to
answer yes/no and other choice-based questions by looking at 2
cards that are held up for her or displayed on her iPad. We have also
recently begun working with the Tobii C12 eye-gaze communication
device. The main goal in the classroom is to expose her to the same
vocabulary, verbalize your expectations for her, give her many
choices, and use eye- gaze communication as often as possible.
Sensory Needs- Lily’s sometimes struggles with transitions. She
dislikes her face being wiped and sometimes flinches when things get
too close to her face. She is generally not bothered by bright lights or
loud noises. Girls with Rett Syndrome have been shown to acquire
new skills MUCH faster when they are stimulated daily through many
sensory activities. She loves toys with lights and music, as they are
very stimulating.
Toileting- We are currently working with Lily on potty training. She
likes to use the potty and is happy to try. We usually sense a BM is
coming when Lily starts grunting and quickly get her to the potty.
However, we have not figured out a way for her to successfully let us
know that she has to urinate. We just put her on it every hour or two.
Once on the potty, sometimes it takes a bit for her to go. But, within 15 minutes she usually has success. She sits well on the toilet as long
as someone is able to hold her sitting there and “spot” her. She is
fairly regular with her bowel movements, usually around in the
morning.
Behavior- It is important to know the difference between
uncontrollable actions and true behaviors. Girls with Rett Syndrome
sometimes exhibit screaming/squealing spells resulting from
frustration or excitement. When Lily reaches for items or people, her
hands move fast and hard and it might appear that she it hitting. She
sometimes bites out of excitement or
when trying to give a kiss. Lily
does understand the word “no”, but
may not be able to voluntarily make
her body cooperate with the command.
What is Rett Syndrome?
Rett Syndrome is a neurodevelopmental disorder that affects, almost exclusively, girls. It is
diagnosed by symptoms and confirmed by a genetics test. The diagnostic criteria include:
1.
apparently normal prenatal and perinatal history
2.
development largely normal through the first six months of life
3.
normal head circumference at birth with postnatal deceleration of head growth in the
majority of patients
4.
loss of achieved purposeful hand skill between ages six months and 2.5 years
5.
stereotypic hand movements such as hand wringing/squeezing, clapping/tapping,
mouthing and washing/rubbing automatisms
6.
emerging social withdrawal, communication dysfunction, loss of learned words, and
cognitive impairment
7.
impaired (dyspraxic) or failing locomotion (walking or movement)
Lily meets all of the primary criteria.
Lily also has all of secondary/supportive criteria
(except for scoliosis and seizures) including:

awake disturbances of breathing (breath-
holding and hyperventilation)


impaired sleep pattern

abnormal muscle tone

growth retardation
teeth grinding (bruxism)

small feet and hands

cold, blue hands and feet

scoliosis/kyphosis progressing through childhood (NOT YET)

seizures (NOT YET)
So... what does this mean???
Rett is a life-long disorder, but it is not fatal. Life expectancy for girls
with RS is 40-60 years. Lily will never talk (girls with RS are often
referred to as "Silent Angels") and many never walk. However most
girls learn to communicate with their eyes at differing levels. Many will
develop seizures and scoliosis, although we have thankfully avoided
these so far.
What is important to remember about girls with Rett
Syndrome???
 Many girls with Rett Syndrome have normal intelligence… they
are simply trapped inside a body that doesn’t respond.
 Assume TOTAL COMPETENCE!!!
 Many girls learn to read and function in a regular classroom with
assistance, however, they must be exposed to the same
curriculum as everyone else and they must have high
expectations and have those expectations communicated to
them!
For more information on Rett Syndrome, go to:
www.girlpower2cure.org
www.rettsyndrome.org
Medical/Therapy Team:
Pediatrician – Dr. Nicole Mozden @
Children’s Wellness Center (708-3641550)
Neurologist- Dr. Peter Heydemann @
Rush (312-942-4036)
Gastroenterologist- Dr. Christopher Smith @ Hope (708-684-5650)
Physiatrist- Dr. Debra Gaebler @ Rehab Inst. of Chicago (312-238-1000)
PT- Margie Mizera at Kids in Motion (708-371-7007)
OT- Sue Peterson (708-683-4245)
Speech- Kristina Menig (708-369-8427)
Horse Therapist- Terry at Forestview Farms (708-560-0306)
Parent Contact Information:
Jennifer Brown (mom):
Jonathan Brown (dad)
Home- 708-535-9133
Home- 708-535-9133
Cell- 708-212-6703
Cell/Work- 219-299-7970
Work- 815-485-2115
Email: grillmasterjon@gmail.com
Email: jenniferbrown79@aol.com
THANK YOU for taking the time to read about
Lily!