Meet Drew. She is my little-big force of nature! One you cannot miss and will not easily forget. She is a constellation of multiple highly complex diagnoses, namely severe-to-profound Autism (level 3), Epilepsy, OCD, ADHD, Emotional Dysregulation, Intellectual Disability, and Sensory Processing Disorder to name a few. We recently found out the core culprit and explanation behind these complex conditions: A rare genetic mutation that occurred in Drew’s GRIA2. This is a gene we all have within our internal coding, however, in Drew’s case, it got ruffled along its edges and sent wrong algorithms to her brain while she was forming in utero.

A rare genetic disease won’t mean anything to anyone, but what does matter is how a minuscule fault line on one of our 20,500 genes can profoundly affect a human being for life. It’s actually pretty miraculous so many of us turn out okay when you think about it, but we take a lot for granted when all is well.

That said, we parents are only as well as your sickest child, especially when their sickness has such critical ramifications. I need to be Drew’s voice and tireless advocate as she herself, and her life will never be normal, safe, or easy unless an army of warriors and educated standuppers are there to support, fight and love her through thick and thin!

I will try to paint the best picture I can of what it means to live with GRIA2. In Drew’s case, this manifests
mostly through her autism and respective fascinating idiosyncrasies that make her so special. I must warn you
this stuff is not for the faint of heart, and some of the testimonial below is not easy to read.

DREW’S AUTISM: Beauty and The Beast
It is commonly said that “when you’ve met a person with autism, you’ve met a person with autism” because
each autistic individual is like a snowflake with its own unique place on this vast spectrum. Autism is a
fascinating lifelong condition, still highly misunderstood and inexplicable, but we all need to understand how it
presents, not only to reduce stigma, but also for the safety of this community. Among other challenges,
autistic individuals struggle to navigate societal rules and etiquette. While this can be endearing in some
circles, it can also be woefully misinterpreted in the wrong circumstances as delinquent or even criminal
behavior.

Here is what Drew’s autism looks like:
SOCIAL EMOTIONAL: A Gordian Knot
o Uncomfortable in social circles; usually highly antisocial; Low to non-existent EQ
o Rare eye contact
o Little-to-no back & forth logical discussions
o Unusual body language such as standing too close to others, or over-engaging with strangers
o Extreme emotional swings/breakdowns, resulting in verbal and/or physical aggression.

Drew is chronologically 12, however, her cognitive age is closer to that of a toddler. This means there’s an
egregious disconnect between her size and the infantile activities she likes to engage in. She is a treat to be
around when she’s in a good mood, meaning, when she is in a familiar environment, with people she knows
and schedules she can predict. She is highly verbal, has a wonderful sense of humor, loves to crack jokes, play,
draw and listen to music. When Drew is in her element, she is a lovebug, full of hugs, kisses, and deep
affection. That said, when she is dysregulated, she turns into a force to be reckoned with and can pose a
serious threat to those around her. At best, she will verbally assault you, at worst, she will become extremely
violent and physically aggressive. Akin to Jekyll and Hyde, Drew can flip personas on a dime if triggered the
wrong way. If her dysregulation builds into a full-scale rage, she will often scream, spit, kick, punch, bite and
lunge at people, children, babies, loved ones, animals without any regard towards or comprehension of
societal or ethical consequences. It is scary, it is immoral, it is wrong, but this is much bigger than Drew and
there is no way out but through. This paroxysmal state takes a while to pass, and it can wreak serious havoc
on anyone or anything within reach. But it’s a waiting game, as nothing can bring down this type of rage. It’s
as if she was stuck inside a race car careening uncontrollably at 200 miles an hour with no brakes to pump
until the inevitable crash.

CONTROL and ANXIETY: Drew’s Ever-Present Twin Demons
o Constant irrational fears that are inconsolable
o Obsession with control, impulsive lining up, repetition and need for order
o Dependence on repetitive schedules & ritualistic routines
o Highly averse to change, unpredictability, and unfamiliarity

Drew struggles in social circles and prefers to stay isolated unless she has full understanding of, and control
over the destination, people, and environment she is going to. Alas, as we rational folks know, this is not how
the world works. Anxiety is a constant demon that plagues her with the ubiquitous threat of an “enemy
attack”; her enemy being Change. The irrationality of her deepest struggles means there is little-to-no logical
way to soothe, alleviate or solve her plight. Drew’s default coping mechanism is to “shrink” her daily
environment and to exert micro-control over it. You will find Drew compulsively lining up random items
around the house, wearing the exact same clothes every day regardless of the weather (we live in Chicago,
which makes for some rough seasonal clothing adjustments), watching and rewatching the same TV shows ad
nauseam, eating the same breakfast, lunch, and dinner on a continuum; asking the same exact question
repeatedly at the same time every day, you get the idea.

If change happens, anxiety surges and the result is typically extreme violence. As a result, most of the time, we
end up staying at home in fear of what will inevitably go wrong if we venture outside Drew’s comfort zone.
Autism takes hold of entire families, not just the person affected. It means life is very isolating, restrictive, and
limiting. Despite the invisible ball & chain on our ankle, we find solace in discovering new ways to see the
world and enjoying the tiniest victories in their most elemental beauty. Yes, it’s a tough life, however,
sublimating profoundly autistic children is much harder for them than it is on us. Societal expectations are
often unfair towards the most helpless people, so it is only fair we do our part as parents and advocates to
meet halfway and deal with the shame or stigma.

Why the violence?
Boy, do we wish we could crack that nut! It is the bane of our existence and a daily Everest we need to
summit, but through years of living and breathing Drew’s most perplexing battles, I believe Drew’s
evolutionary defense mechanisms of fight, flight, fawn, freeze kept her at that animalistic reactive level where
she’s continuously stuck on “fight” inside a world where the saber tooth tiger still looms large and can pounce
at any moment. The rest of us evolved and have sophisticated societally approved coping mechanisms, as well
as a clear understanding of real threat versus imaginary fears. All of that is collapsed in Drew’s mind, so in
many ways, she is constantly on edge and ready for battle.

COMMUNICATIONS: A Fish Out of Water
o Uses sound bites as if talking from a script (also known as “echolalia”); often off-topic or in the
wrong context
o Speaks loudly, robotically, or awkwardly. Non sequiturs
o Talks about the same topics on repeat

Drew doesn’t wear her disability on her face, but it doesn’t take long for any layman to see that something is
“off” when they first meet her. It’s an unsettling feeling, one you can’t put your finger on. Most people don’t
know what autism is, and because it looks different on each affected person, it can be highly confusing,
endearing and perplexing all at once. Especially for people like Drew who fall in this strange limbo of not being
“normal” enough nor disabled enough to fit into any one category.

Drew will stand too close to you, avoid all eye contact yet chew your ear off while firing off highly specific yet
unrelated questions with an unequivocal sense of urgency like “What kind of cat do you have” followed by “do
you know how tall fire engine 10’s ladder can reach?” followed by “What number is your house?”

Drew is highly verbal, but her ability to conversate is nil, which makes for a surprising dichotomy. She speaks in
non sequiturs and can’t follow a simple train of thought. In fact, she speaks in patterns much like the way she
lines up items around the house in repetitive sequences.

Drew also struggles with differentiating reality from fiction. She often speaks about her favorite cartoon
characters and asks when they’re coming over to play with her. Her dressing up and pretend play seem to join
this mental game of blending real and fantasy into one. It tethers her to this confusing world she’s a part of
yet doesn’t seem to belong to. She’s making something hard and confusing more amenable to her
understanding. It’s almost like she’s putting googly eyes on a monster to anthropomorphize the
incomprehensible and make the beast look less scary.

Ironically, her garrulous ability led to an overly generous diagnosis of Asperger’s when she was 3 years old.
Doctors tend to conflate highly verbal with highly functioning, especially when the patient is a girl. Many still
think autism is the disease of boys, which couldn’t be further from the truth as we found out. Despite her
loquacious ability and an impressive vocabulary, Drew’s speech is slurred, and she’s incapable of engaging in a
back & forth conversation flow. Instead, she will drive the discussion regardless of what is asked of her, and
she will rigidly bring the topics back to her core subjects of predilection:

I. Firefighters and all Emergency scenarios: Drew will routinely dress as a fireman on any given day.
She also likes to have the family join in on her alter ego firefighting escapades. You might see her
and her dad in full get-up running errands at Costco on any given Saturday. Drew can tell you the
exact function, measurements, and core components of each Chicago Fire Department truck
engine in existence. When she grows up, she plans on joining the Chicago Fire Department. She
also plans on marrying Fireman Sam one day (He’s a cartoon character mind you). She also
consistently seeks every emergency exit door and stairwell in any public setting we take her to. If
she seems lost, chances are you will find Drew hanging around the nearest emergency exit door,
and you better get to her quickly or she will push it open and ignite all alarms and sirens!

II. Her cat, Juice: Whom she loves more than anyone in this world yet will torture with reckless
abandon! He is the purest embodiment of tolerance, kindness, acceptance, and Stockholm
Syndrome!

III. Airplanes and Automobiles: She loves to enumerate all the airlines in existence but is particularly
fond of Southwest Airlines because of its cool colors and b/c it’s the carrier that takes us to see
family on the east coast when we travel together (which is highly rare). She will gleefully quiz you
on every car on the highway and proudly confirm car models and details down to the most minute
detail

IV. Trains: Specifically, freight trains. She is both terrified by and infatuated with freight trains. Their
squeaking grind is audible from our house, so it’s part of her environment, but something about
their size, their length and their imposing nature shakes Drew to the core. So, we like to get silly
about what these freight trains carry: kittens, bacon, a whole lot of firefighters and other
absurdities

V. Classic Rock: She knows every Journey, Rolling Stones, Twisted Sister, and Queen classics under the
sun. She’s best friends with Steve Perry whom she expects at our house “any minute now” and will
require that you fervently headbang alongside her with your hands in “rock on” mode as you belt
out your best Freddy Mercury in unison!

If Drew ever sounds logical in a discussion, it usually means she is blurting out soundbites she learned by heart
while watching a show. This is known as echolalia, where memorizing entire scripts becomes an ersatz for real
conversation. Most of the time, these verbal stunts are off-topic and out of context, but the inner
machinations of her mind are so palpable and fascinating that we marvel at the beautiful weirdness of it all.

SENSORY SEEKING/AVOIDING: Senses on Steroids
o Hypersensitive (feel too much) with her hearing and vision. Hyposensitive (feel too little) with
oral and touch.
o Tends to seek vestibular or proprioceptive input such as intense swinging, bouncing, pushing,
chewing/grinding, fidgeting
o Needs sensory input as calming mechanism when neural system is on overdrive
o Indifference to temperature extremes or pain; self-harm is commonly used as soothing tactic.

I became increasingly worried about Drew’s condition when she was about 1.5 years old and would spend
hours staring at moving objects. When I would get together with other moms for play dates, she would
consistently avoid other kids, army crawl to the nearest door and repeatedly open & close it with a blank stare
on her face. Then came the headbanging, which obviously seemed horrifying at the time. As it turns out, many
autistic kids need extreme sensory input to calm their over-hyped nervous system. What seems unthinkable to
us neurotypicals, is what these kids seek to cope with their overwhelming environment. Drew’s preferred
sensory soothers include:
• Swinging and Getting upside down – Vestibular input
• Pushing against heavy resistance – Proprioceptive input
• Eating – Oral input regardless of hunger or appetite
• Nail and skin biting – Drew routinely bites her fingernails and toenails, often until they’re completely
ripped off their nail beds
• Swimming or being submerged in a body of water – Gravity pull is soothing
• “Tickle Piling” – Drew’s made-up word for masturbation. Here again, societal or decency rules don’t
apply or register with Drew. She is shameless. When her anxiety peaks, Drew will default to the most
immediate way she can repress her fears. It is primal and highly inappropriate, but that’s on us
neurotypicals to deal with. After all, we are privileged to have logic and reason on our side.

PERSEVERATION: The Rain Man Effect
o Brain stuck on repeat
o Hyper fixation on restricted topics
o Narrow and rigid interests; hyper-focused mindset; savant-like behavior

Drew thrives on repetition. She will talk about the same topics repeatedly without ever tiring of hearing the
same story, response, or outcome. She needs that constant reassurance that the answer is predictable and
moored in her sense of reality. What is “real” anyway?? She has a point!

There’s a theory that autistic people are savants, like Rain Main in Las Vegas winning over the house thanks to
his mathematical genius. It’s not that simple or glorious. Autistic people do have an uncanny ability to
hyperfocus, but it doesn’t mean they will become the next Elon Musk or Michael Burry (though both also have
autism). Drew for example, knows every car model on the road as well as every flag around the globe. Drew
will plumb the depths of her obsessions, but most of the time, these infatuations don’t translate into tangible
career opportunities. They’re just weird fascinations with weird facts and manifestations.
Repetition and rigidity reign supreme in Drew’s daily discussions, but they also have a strangle hold on her
lifestyle.

Clothing:
Drew refuses to wear anything new. Between her rigid mindset hell bent on repetition, as well as her sensory
processing disorder, she refuses to wear anything other than her same shorts and t-shirt in the summer, and
the same pants and tops in the winter. They have to be the exact color, exact brand, exact fit, exact cut, exact
everything and NO TAGS allowed! We usually buy many versions of the same outfit, cut off all the tags and
discreetly add them to her stock, so she won’t notice the outfit has changed in any way. Now you see why
Rain Man was perseverating over his underwear from Kmart. Drew is hugely picky about her underwear too.
You can imagine how fun it was when the time came for Drew to wear bras, and worse yet, deal with
menstrual pads and respective ministrations! Also, we live in Chicago where temperatures drop drastically in
the fall. It takes Drew a few weeks to acquiesce to warmer clothes, but a frigid day with shorts & t-shirts
typically enable the transition to happen despite her stubbornness! If it were up to Drew, she would walk
about life naked all day every day. Or maybe half the time naked, half the time in her firefighter suit

Travel/Going anywhere:
Living with an autistic child means your world gets progressively smaller as they grow. We used to be able to
travel and go places when she was small and removeable from dire situations. Now, however, Drew is big,
very big. She is tall and she is strong. Imagine a trigger-happy muscular kid with the executive function of a
wild animal, a toddler’s cognitive ability and an aggressively misanthropic mindset! The last time we traveled
to Delaware to visit family, Drew barely made it onto the plane without attacking passengers. Once seated,
the purser and the pilot both approached us and asked if we were “going home or traveling to visit” meaning
they were hoping they could deboard us from the plane lest risking further casualties in the air! We made it
home, but it was very ugly. I vowed never to travel with Drew again given the massive collateral damage.

People and Public Spaces:
Drew has little-to-no emotional intelligence. She can emote, but much like her language, it comes off as
canned, artificial, or scripted. She is also fascinated with emotions, likely because she doesn’t quite
understand “big feelings.” This is also why Drew is particularly fascinated with babies and little kids, because
they display emotions in a raw way with complete unpredictability. If a baby starts to cry near Drew, she will
drop everything and observe the child with sheer awe and amazement as if the baby transformed into a
unicorn Pegasus! Drew in many ways yearns to return to her baby-self and often asks why she no longer needs
a pacifier, baby bottle, crib, or diapers. This is likely due to her inability to fully comprehend time and space
(more on that below), which she sees as a monolithic continuum of incomprehensible events.

When we go to parks – which we actually avoid like the plague – her first order of business is to beeline to the
baby swings, which she continuously insists on riding despite being absurdly disproportionately too large for.

Through stubborn determination and serious shimmying, she manages to hoist herself up and awkwardly
kneel in the baby swing, finding extreme joy in this infantile object. She will not only lay claim to all the park’s
baby swings, but she will go as far as terrifying any & all wee bairns who presume to occupy what she
considers hers. A real despot monopolizing what clearly does not belong to her!

In short, if you are a human being and you live on this planet, chances are Drew will terrorize you, especially if
you’re small and have big unpredictable emotions! It sounds hyperbolic, but it’s true. Why? Because strangers
and children especially are unknown entities whom she can’t control, predict or understand. We happen to
live in downtown Chicago, which means her worst enemies are around her 24/7. As a result, we shun popular
parks or public spaces that are likely to be crowded with people and children, which is an interesting
predicament when you live in the heart of downtown Chicago… so we resort to frequenting undesirable parks
in abandoned lots or in rough neighborhoods with kids who can handle a tough case like Drew.

We also use extreme weather to our advantage and hit popular destinations at unfavorable times to avoid
human encounters! Winter vortexes, frigid temperatures, snowstorms are all examples of times you WILL see
us at the park. It’s a topsy turvy world, one where we need to constantly think on our toes and recalibrate all
notions of “normalcy” and daily living – if not survival – when seen through the lens of profound autism.

TIME & SPACE: A vast Expanse of Nonsense
Drew only lives in the “now.” She does not understand the future and is highly confounded by the past. She
spends hours looking at old photos of our life on her iPad as if to grasp how those precious moments passed.
She is also highly anxious of the future and struggles to wrap her head around something that is supposed to
happen but isn’t here yet. If it’s not happening immediately, it does not exist! As such, when it comes to
events that are not engraved in Drew’s daily routine, we live on a “need to know basis” and only reveal new
information to Drew when it’s about to happen. Otherwise, we are faced with an onslaught of anxiety and all
its pernicious side effects.

Drew is also highly unaware of her position in space and the position of others in relation to her. She stands
too close to people, moves awkwardly, trips over herself and is prone to injuries. She has never been able to
sleep well, and habitually wakes up several times a night asking if she can “Start the day” even if it’s 1 or 2am.
When we ask her to go back to bed, she reluctantly plops herself back in her bed as if oppressed by this
biological need to sleep. To Drew, nighttime is a vast expanse of excruciating nothingness that stands
immutably in the way of her maniacal control on the day, which is Drew’s real and only “raison d’être”.

The Beauty
Drew sticks out like a sore thumb, and she digs deep. If you meet Drew, chances are you will never forget her.
There is true beauty in her condition that is impossible to replicate inside a neurotypical person. She is as pure
a human being as it comes. There is no filter, no pre-meditation, no societal barrier that gets in the way of her
actions or words. This can shock, hurt, or offend, but in many ways, Drew and autism can teach us a lesson in
how we can all operate in the most authentic and genuine of ways. Drew never lies, never prevaricates, never
minces words. She might be a strange eyesore and an outrageous kid with unsettling idiosyncrasies, but she is
100% real and raw 100% of the time. I wish I could be more like Drew sometimes!

Also, Drew loves to love. It is a misconception to portray autistic kids as stolid, emotionless, and cold. Drew
has the best sense of humor you’ll ever come across, she is witty with her jokes, can throw clever puns and
catch quips. She is also a profligate hugger and loves to show affection, albeit on her terms and usually in the
wrong context, but she is a true lover! Her highs are very high, and her lows are very low, but when we can
extract the perfect balanced goldilocks version of Drew, she is a treasure!

Fighting the Good Fight
A small autistic kid is cute. Yes, they still have serious rages and violent breakdowns, but you can manage
them, pick them up, remove them from a dangerous situation, go home and focus on the next ineluctable
challenge. It’s a very different story when they grow up and are less cute. Right around the age of 10, you’re
now dealing with a prepubescent quasi-adult going through hormonal changes, body development, weight
gain (not least due to the many medications they are on), acne, body odor and all the usual charms of a preadolescence… Life becomes much harder to navigate when the idiosyncrasies and cognitive dissonances of
profound autism now live inside a large and imposing body. They become a nuisance, a problem, a threat at
school, in therapy and in most places otherwise accessible to all.

Tragically, many autistic people have been attacked or even shot by the Police while in a state of
dysregulation, which was misinterpreted as non-compliance. Police departments across the U.S. are now
undergoing new and specialized trainings to better understand and decipher these nuances in human
capacity, as well as mental health manifestations. There is a big – and often dangerous – difference between
“won’t do” and “can’t do.”

Raising a child with a genetic disease that causes autism, epilepsy, ADHD, intellectual disability, and severe
behavioral challenges is ineffably hard. Imagine a toddler’s brain inside a large grown body with zero executive
function, zero care for or understanding of consequences or bad actions, no grasp of time & space, a
compulsive need to self-mutilate, an obsession with blood (her own or others’), a clumsy demeanor, a
disoriented self-awareness, and at constant risk of seizure, you’re left with a ticking human atomic bomb! In
sum, it’s never a matter of “hard” versus “easy”, but rather a matter of “hard” versus “less hard.” It’s a daily
marathon and a daily sprint, with an invisible finish line we need to create and believe in, otherwise the
struggle becomes too hard to bear.

There is no manual, much less special wheelchair, accommodation, access ramp or Braille for kids like Drew.
What makes her human is vastly different from what the rest of us know and understand. What we take for
granted or consider second nature is a battle for Drew. It can be disconcerting and uncomfortable to be
around anything/anyone out of the ordinary. As a mom of autism, I advocate for all neurotypicals to continue
opening our hearts & minds to all differences, no matter how scary. “Normal” is a very relative, social
construct. In the world of autism, “normal” is a terrifying and alienating concept! My hope is that we can all
meet halfway and accept each other’s uniqueness through new lenses, hard work, compassion, and evergrowing tolerance; especially those of us who have the privilege of knowing the difference.

DREW’S EPILEPSY: Grim Reaper’s Shadow
I’ll never forget April 1, 2020; April Fool’s Day of a terrible year as the world had just shut down to batten
down the hatches while the global pandemic raged on. My husband had just left for work, and I was getting
ready for at-home schooling and therapy to begin for Drew and her older sister Romy who was still deeply
asleep. Drew was playing near me when out of the blue she startlingly exclaimed “mama! My tongue!” with a
look of panic in her eyes.
Within seconds her entire face scrunched up grotesquely and abruptly shifted leftward; her eyes, nose,
mouth, brows all distended as if pulled from inside her skin. It was horrifying. Her eyes rolled to the back of
her head, she fell to the ground and turned blue in the face. I tried to carry her to my phone to call 911 but my
phone was nowhere to be found and Drew’s state was worsening by the second. She started convulsing and I
started screaming like a banshee as I was convinced my baby was dying in my arms. I had never seen anyone
have a seizure before, so I thought Drew was having a stroke or a heart attack. Faced with what I thought was
a dying child, my superhuman maternal adrenaline rushed and I started performing CPR, manically pumping
Drew’s little chest, and breathing into her mouth through my uncontrollable tears and sobs. The neighbors
heard my screams and called 911.

My poor Romy (Drew’s older sister) was having a panic attack in the corner of the room as she witnessed me
trying to resuscitate her little sister lying idle on the kitchen floor with her unconscious body convulsing by the
cat’s food bowls. 6 minutes felt like endless hours of hell until the ambulance arrived and a team of EMTs
entered our house in their hazmat suits. Drew came out of her unconscious state and vomited profusely half
because her brain had just been beat up like a rag doll and half because she couldn’t understand what these
weird people were doing in her house. They picked her up, whisked her to the ambulance and we ended up at
the Northwestern Children’s Hospital Emergency Room within minutes.

It was a terrible time to be in the emergency room. The pandemic paranoia was at an all-time high, and people
were advised not to leave their homes unless their lives depended on it. We kind of qualified in this case, but
they still sent Drew home with a wearable heart monitor and a giant question mark on her bill of health.

Unfortunately, seizures of this magnitude don’t just go away. Like an earthquake, they lay dormant, and
aftershocks sneak their way back. Within four weeks, Drew had another massive attack and this time she had
two in a row. The ambulance came again, this time, she was admitted and unequivocally diagnosed as
epileptic.

Turns out 40% of children with autism also have or will get epilepsy.

After innumerable tests, EKGs, EEGs, shots, poking, prodding, questioning, prevaricating, the diagnosis of
epilepsy was added to her panoply of pathologies. We now have a second massive spectrum to contend with,
and three new kinds of antiseizure medications to swallow twice a day every day (in addition to the other 4
meds she’s on for her comorbidities). Another deeply perplexing and unanswerable condition where there is
much more unknown than known. This one like a lurking specter looming over us that could take hold of Drew
at any point in time like a demon waiting to possess its host.

Since Drew was diagnosed with epilepsy three years ago, she has suffered over to 30 Tonic Clonic seizures like
the one she suffered on that doom-laden April Fool’s Day in 2020. Those are the worst and most violent kind
of seizure. She also seizes frequently in between those massive attacks with either Febrile or Absent seizures –
the less noticeable but still devastating kind.

Unfortunately, every seizure seems to erase all the hard work Drew puts in to better fit into our world. Like a giant eraser wiping her slate clean and making her start all over from the start. Every time Drew acquires new skills in her intensive daily therapies and makes progress, her Sisyphean rock rolls down the mountain with each brain-rattling seizure. We are not out of the woods either.

Drew might need to live with seizures for the long haul, but we haven’t given up on the hope of finding the
right meds cocktail or other solution. Never give up on hope!

We obviously can’t live a “normal” life given the risks Drew presents. Traveling, going out to restaurants,
parks, dinner with friends or any spontaneous activities are out of the question. Sometimes, my husband and I
feel like we are prisoners of Drew’s disease, but we try to stay strong as best we can. We also try to remain
examples of good parents to our other daughter Romy who is 14 and needs us to be there for her too. We all
need to remember that siblings of children with disabilities suffer tremendously in their own right. This further
motivates me and my husband to stay focused on the Good as best we can.

Hard is relative and we try to remember what we have, not what we lack. It requires will, relentless optimism,
endurance, strength, and superhuman dedication with blindless faith that all will be “okay”, which in turn,
makes us better citizens of the world, right? I do hope we all as a community can keep learning more about all
rare genetic diseases, how to treat them and ensure those who care for these special kids are also well tended
to. It takes a Village; actually, in our case, it takes a Metropolis, but we look forward and keep laughing while
we move our mountains!