Sterling Nova Lynn Raspe

8th September 202011th May 2021 two hundred & forty-five precious days

The word Sterling comes from the word steorra, meaning star. The word nova means new. A nova is when a star's gas builds up and triggers an explosion making it shine up to a million times brighter than normal.

Sterling's signature pigtails

Sterling Raspe was an incredible little girl who was the epitome of strength.

Sterling lived for 245 days and spent 207 of those days in the Pediatric Cardiac Unit in Oak Lawn, IL, USA. She had 9 surgeries, including 4 major heart surgeries. She was a very special little girl. Depending on who you ask, anywhere between 700 million to two billion - or 1 of between 4-11 people in the world.

She was very special.

She was diagnosed with:

  • a rare variant of hypoplastic left heart syndrome (HLHS)
  • kabuki syndrome
  • being severely immunocompromised (IgG deficient)
  • isomerism/heterotaxy
  • pulmonary stenosis
  • severe/moderate hearing loss
  • hypotonia
  • multiple brain bleeds
  • hip dysplasia
  • hyperinsulinemia
  • …and unfortunately, that's not a complete list

Every time a bead is given, courage is honored, suffering is alleviated, resilience is strengthened, and the experience of human caring is affirmed. Every Beads of Courage Program integrates the use of beads, the earliest art form known to humans, as visible, tangible symbols of human experiences that need and deserve to be expressed.

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Day 1

2020/09/08

I was diagnosed with a single kidney and HLHS at 22wks gestation

I was born in a room of about 30 people

I needed an immediate cardiac catheterisation to open a restrictive valve in my heart

I aspirated my meconium (inhaled my poop)

I didn't get to meet or even see my parents

I was whisked away within seconds of leaving my mommy's belly

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Day 2

2020/09/09

My mommy held me for the first time

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Day 3

2020/09/10

My daddy held me for the first time

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Day 4

2020/09/11

I needed my first non-OR blood transfusion

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Doctors thought I had an infection

I had 2 failed spinal taps

I didn't have an infection

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Day 7

2020/09/14

I had my first major open-heart surgery - the Norwood

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Day 9

2020/09/16

Doctors left my sternum open after surgery to allow my chest to swell

I had it closed today

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Day 13

2020/09/20

The chest tube doctors placed to drain fluid was removed today

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Day 14

2020/09/21

I had my breathing tube removed

I let out my first cry

I had my first suck on a pacifier

I was diagnosed with hyperinsulemia

I had my first therapy session

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Day 15

2020/09/22

My mommy and daddy held me for the first time since my Norwood heart surgery

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Day 16

2020/09/23

Doctors found my 2nd kidney

it was behind my pelvis

it doesn't work that well, though

It's my mommy's and daddy's anniversary

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Day 18

2020/09/25

My sodium dropped dangerously low (113)

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I had an arterial line removed

I had my first skin-to-skin 😌

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Day 20

2020/09/27

I took my first breaths off the ventilator since my heart surgery

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I had my first tummy time

my mommy and daddy pushed my meds for the first time

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Day 21

2020/09/28

I took my first breaths without any oxygen support

I breathed the same air as my mommy and daddy

I got diagnosed with hip dysplasia

I drank 1ml of my mom's breast milk - yummy!

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Day 22

2020/09/29

I was diagnosed with hypotonia

I was prematurey diagnosed with a tethered spinal cord

I left the PCICU for the first time to have an x-ray under contrast to test my kidneys

my pacer wire was removed

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Day 24

2020/10/01

I had my first MRI and it showed I had a small brain bleed

It was my first day without fentanyl since my heart surgery

It was the first time wearing my hip brace

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Day 25

2020/10/02

My scar wasn't healing, I had my first Acell treatment to help my wound heal faster

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Day 26

2020/10/03

I had low sodium (115)

I had more blood transfusions

I needed more oxygen support

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Day 27

2020/10/04

I needed my first tylenol/paracetamol

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Day 30

2020/10/07

I had my 2nd MRI

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Day 31

2020/10/08

Doctors discovered I had a potential neuroblastoma - a cancer on my adrenal gland

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I needed more oxygen support

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Day 32

2020/10/09

I had my 3rd MRI

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Day 34

2020/10/11

I smiled for the firs time 🥰

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Day 37

2020/10/14

I had another scan on my brain bleed

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Day 38

2020/10/15

Doctors discovered my neuroblastoma was benign

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Day 40

2020/10/17

I required less oxygen support

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Day 41

2020/10/18

I wasn't growing a lot, so doctors increased my feeds

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Day 42

2020/10/19

Speech therapy helped me take 5ml of breast milk by bottle - yummy!

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Day 46

2020/10/23

I had an IV line removed from my arm

but I had another placed in my foot 😅

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My oxygen support was lowered

I was breathing room air again!

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Day 52

2020/10/29

I needed more oxygen support

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Day 57

2020/11/03

Mommy and daddy washed my hair for the first time!

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I had an x-ray with contrast to check on my intestines

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Day 58

2020/11/04

I was diagnosed with malrotation

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Day 61

2020/11/07

I still wasn't growing as fast as I should

I had my first dose of IV fat lipids!

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Day 66

2020/11/12

My mommy, daddy, and I had our blood tested to check for any genetic conditions (an exome test)

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I wasn't growing as fast as I should, so doctors increased my feeds!

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Day 73

2020/11/19

Getting fed into my stomach upsets me

I had a feeding tube placed in my nose, through my stomach, and into my small intestine (NJ tube).

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Day 77

2020/11/23

I stopped taking dexmedetomidine (a strong seditive)

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Day 82

2020/11/28

I stopped breathing for a few seconds.

I turned blue

a nurse had to press the emergency button

which brought my all nurse/doctor friends into my room

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Day 83

2020/11/29

I held my breath again

I turned blue
my dad had to press the emergency button

I got to see all my friends at the same time, again

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Day 90

2020/12/06

I got to meet my grandma for the first time! 👵

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Day 91

2020/12/07

My heart rate wouldn't slow down

it was in the 200s for a few hours

even while I slept

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Day 93

2020/12/09

I had MCT oil added to my feed

I need to grow some more!

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My exome/DNA tests back, I was diagnosed with Kabuki (queen) syndrome

Kabuki syndrome is a rare, multisystem disorder characterized by multiple abnormalities and a wide variety of additional symptoms affecting multiple different organ systems.

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Day 95

2020/12/11

I coughed up my NJ tube - it had to be placed again :(

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Day 99

2020/12/15

I had a catheterisation procedure to check if I was ready for my 2nd major heart surgery

I was ready!

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Day 112

2020/12/28

I had my 2nd heart major heart surgery - the Glenn!

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with no breathing tube

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but I was bleeding more than normal..

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I needed an emergency bed-side surgery to fix a leaky artery

I had to be intubated, again

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My heart surgeon opened my freshly-stitched chest wall to fix the tear

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I lost a lot of blood

It was very scary

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I lost twice the volume of blood in my body

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Day 114

2020/12/30

I had my breathing tube removed

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Day 115

2020/12/31

My parents held me for the first time since my 2nd major heart surgery!

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Day 116

2021/01/01

I welcomed the new year with my mommy and daddy & my nurse friends!

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Day 117

2021/01/02

I had my chest tube removed!

I pooped explosively... I had to have my hair resucitated (washed)

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Day 119

2021/01/04

I coughed up my feeding tube and had to have it placed again :(

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Day 120

2021/01/05

I needed less oxygen support

I was now on a regular oxygen cannular

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Day 121

2021/01/06

I had a transthoracic line removed!

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Day 123

2021/01/08

I needed less oxygen support!

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Day 125

2021/01/10

Dad pulled out a femoral artery IV line :(

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Day 126

2021/01/11

My mom and dad played with me on the floor for the first time!

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Day 132

2021/01/17

My blood pressure got really low

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Day 136

2021/01/21

I had another surgery

I had a feeding tube placed directly into my stomach

...no more tube in my nose!

Doctors also fixed my malrotation and removed my appendix (LADDs procedure)

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Day 137

2021/01/22

I had my first poop since the LADDs procedure!

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Day 139

2021/01/24

I stopped drinking pedialite and got to drink my mommy's breast milk again - yum!

My parents held me for the first time since my LADDs procedure

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Day 143

2021/01/28

I was well enough to leave the ICU, and was moved to a step down unit!

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Day 144

2021/01/29

My mommy and daddy prepared all my daily medications on their own for the first time

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Day 145

2021/01/30

My mommy and daddy took care of me for 48 hours in the hospital, without assistance

They were ready to take me home!

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Day 147

2021/02/01

I failed my hearing test :(

I have moderate/severe hearing loss and will need hearing aids

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I blocked my feeding tube

Diet Coke cleared the blockage and saved the day!

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...and..

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I GOT TO GO HOME!

I met my fur-brother

I saw Lake Michigan for the first time.

I met my family

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Day 163

2021/02/17

Not for long, through

I aspirated at home, and de-saturated enough to be rushed to the ER

I was immediately admitted to the PCICU... again

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Day 165

2021/02/19

I needed a lot of oxygen support

12L/min of oxygen to be exact

I narrowly avoided being intubated

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Day 166

2021/02/20

I have very small veins/arteries

Doctors have a hard time placing lines

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Day 167

2021/02/21

I pulled out my arm IV

I pulled out my thumb IV

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Day 168

2021/02/22

I needed less oxygen support

I was now on 6L/min of oxygen

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Day 171

2021/02/25

Doctors needed better access to my blood (I kept pulling my IVs out)

They placed a central line

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Day 172

2021/02/26

I suddenly deteriorated

I needed to be nasally intubated

Doctors discovered I had a deviated septum

It was my daddy's birthday

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Day 175

2021/03/01

I had another cardiac catheterisation procedure to check why I deteriorated and needed so much support.

I got diagnosed with pulmonary stenosis

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Day 177

2021/03/03

I had pulmonary stenosis surgery

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Day 179

2021/03/05

I was extubated!

Being intubated is not good for my heart's new circulaion

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Day 180

2021/03/06

I developed a yeast infection :(

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Day 182

2021/03/08

I turned 6 months old!

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Day 184

2021/03/10

I had another MRI on my spinal cord

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Day 189

2021/03/15

I had an EEG brain scan

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Day 190

2021/03/16

I had another surgery to move my feeding tube to feed my small intestine

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I was one of the first patients to try a new size of stomach feeding tube 🌎

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I had tubes placed in my ears to help drain any fluid

I had moulds made for hearing aids!

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Day 192

2021/03/18

I needed less oxygen support

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Day 193

2021/03/19

I had a CT scan

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Day 195

2021/03/21

I needed less oxygen support

I am down to 1/2L now

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Day 199

2021/03/25

I went home again!

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Day 211

2021/04/06

I got admitted to the ICU... again :(

this time because my sodium was low (115)

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Day 213

2021/04/08

I got my hearing aids!

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Day 215

2021/04/10

I needed better access

Doctors found out I had no more viable IV sites

so they placed a central line in my neck

I was not a happy

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Day 216

2021/04/11

I had my diuretics held

It made me really puffy

I needed to pee off a lot of fluid

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Day 225

2021/04/20

... and I did!

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I got discharged again!

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Day 234

2021/04/29

My mommy and daddy took me to a routine check-up

Doctors told my parents my lungs were very cloudy

I was having trouble breathing

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I was admitted to the PCICU

...again...

My 4th and final admission, this time because of my narrow veins, my lungs weren't able to drain my blood quick enough

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Day 236

2021/05/01

I developed chlothorax

I had a chest tube placed to drain the extra cyle/fluid around my lungs

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Day 238

2021/05/03

I deteriorated and needed to be intubated

I had another catheterisation procedure to find out why I got sick

...again...

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Day 241

2021/05/06

Doctors tried to remove my breathing tube

but I wasn't strong enough without it

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Day 242

2021/05/07

My lungs were very sick from the chlothorax and extra volume

and I started extreme course of antibiotics

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Day 245

2021/05/10

I had a very hard night

My lungs were really, really sick

I waited for my parents to arrive in the morning

I let them know I was ready

I went into cardiac arrest and I was resuscitated with CPR and epinetherin

CPR hurt some of my ribs

I was kept alive by the ventilator for the night

My parents made the brave decision to turn off my ventilator

I took my last breath at 9:22am, peacefully, in the arms of my mommy and daddy, surrounded by my family

I am now forever at peace

Day 253

2021/05/18

Sterling was cremated, and some of her ashes were placed in the soil we used to plant a redbud tree.

Day 5732

2036/05/18

We watered her & we still got to watch her grow into something else equally as beautiful.

over 33 ft / 10 mof string & beads

Bead Count
Admission or Transfer to Intensive Care Unit Square Heart 4
Central Line | Midline | Pheresis Catherter Placement & Removal Orange 179
Clinic Visit Blue 10
Dialysis | TPN | NPO Dark Green 191
Dressing Change & Skin Care Gray 38
Echocardiogram Glow in the Dark 32
Emergency | Unusual Occurrence | Seizure | Cardio Version | Emergency Transport Magenta 22
Isolation Precautions | Fever | Neutropenia Lime 4
IV Infusions Purple 197
Learning New Medications | Parent Education White 30
Nutrition & Diet Transitions Beige 54
Overnight Stay in Hospital Yellow 206
Pokes Black 136
Procedures Tortoise 11
Respiratory Support | Sedation | Anesthesia | Ventilator Pink 206
Test | Scans Light Green 286
Therapy Rainbow 95
Transfusions | Blood Products | Pheresis Red 47
Tube | Catheter | Pacer Wife Placement & Removal Aqua 185
Act of Courage Handmade Glass Selection 30
Cardiac Surgery Silver Square Heart 3
ECMO Small Round Fimo 0
General Surgery | Suture Removal | Staple Removal | Prolonged Chest Closure Silver Star 7
Heart Transplant Handmade Glass Heart 0
Independent Self or Parent Giving Instructions or Injections | Following Medicine Schedule Ceramic Special Selection 6
Special Accomplishment | Recognition of Personal or Family Accomplishment Ceramic Special Selection 16
Medication Challenges Bumpy 10
Mobility Challenges Bumpy 26
Pacemaker and/or Defibrillator Placement Lightning Bolt 0
Parent or Caregiver "Firsts" with Newborn Infants Small Glass Hearts 15
Transfer Units or Facilities | Long Distance Travel for Care | "Upstream Battles" Fish 4
Discharge from Hospital Member's Choice 3
total beads: 2053
 
  • —— visit ——
  • my non-profit
    Sterling Strong Foundation
    Inc. Sterling Strong Foundation, Inc.
  • My daddy and mommy
    are going to support, advocate,
    & fight for children like me.