It's with heavy hearts, we share the news that our sweet girl, Sterling Nova Lynn Raspe, 8 months and 3 days, of Gary, Indiana, passed away peacefully in her parent's arms, surrounded by family at 09:22 AM on May 11th. Born to Madeline Marie Raspe of Crown Point, Indiana and Kingsley Aaron Stafford Raspe, originally of Tamworth, England, at 08:28 AM on September 8th 2020, at Advocate Children's Hospital in Oak Lawn, Illinois.
Sterling's eight months on earth were quite unique, but her story didn't start there. Her story began when her mom and dad met in 2015. Sterling's life was the missing piece to their parent's love story. As if sharing the other half of Banky's "Balloon Girl" tattoo to remember the loss of their parents wasn't fate enough, Sterling was the little girl with the heart-shaped balloon tying Kingsley and Maddie together for life.
At her 21-week anatomy scan, Sterling was diagnosed with hypoplastic left heart syndrome variant (HLHS), a rare type of congenital heart disease (CHD). At three months old, she was diagnosed with Kabuki Syndrome, a rare multi-system-affecting genetic condition that can affect the entire body. Sterling, the HLHS Warrior, was also Sterling the Kabuki Queen. Despite being 1 in 700,000,000+, 207 days in the PCICU, 9 surgeries, there was not a second that went by that Sterling was not smothered in love, prayer, or celebration. Although Sterling's life was short, her fight and strength touched the hearts of strangers from all four corners of the world.
Sterling Nova Lynn Raspe's legacy will live on through the many lives she touched. She was the embodiment of strength, fight, love, hope, peace, and joy. Against all the odds, she taught us to smile through the hard times, laugh at the inappropriate times, love without limits, and see the beauty and worth in all things big and small. She helped raise awareness and shined a light on HLHS, CHD, Kabuki Syndrome, and other rare diseases. Sterling taught us all something.
The word Sterling comes from the word "steorra", meaning star. The word "nova" means new. Sterling Nova. A little star made new and whole in heaven. 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.
May we all remember her life and be "Sterling Strong" because her life and impact on this earth and our hearts was a supernova. May she forever Rest In Peace with our creator who created her perfectly imperfect.
Sterling's service was held at Geisen Funeral Home in Crown Point, Indiana, at 2–7 PM on Tuesday, May 18th. Thank you to everyone who has helped support Sterling, us, and our families during the past year. We couldn't have done it without you.
To honour her legacy, Sterling's mom & I will be creating the Sterling Strong Foundation*. Our goals will be to help families in a similar situation to ours: rare/chronic illnesses, long/multiple ICU stays, multi-system affecting conditions, treatment outside of home state, etc. with a few things which we both personally took comfort from during Sterling's 207 days in the ICU, & help bring awareness to, and be an advocates of, congenital heart disease (CHD), Kabuki syndrome, Isomerism/Heterotaxy, and other rare diseases.
Things such as:
Paying a bill or two
It was difficult to make sure all our I's were dotted and our T's were crossed in the ICU, not to mention adding an entire life outside of the hospital into the mix. Our monthly mortgage payment was paid twice by the generosity of others. It was a tremendous help for us. Maybe paying the water bill, a car payment, home insurance, etc., the smallest of thing can really make the biggest of difference.
We purchased a mini projector and setup a little cinema in Sterling's ICU room. You wouldn't think you could have a 70" private cinema in an ICU room, would you? (we binge-watched Jersey Shore, et al). Things to help make parents/patients feel more comfortable/more at home, given the chaos.
self care items
We realised taking care of yourself is just as important as taking care of your child. Your child feeds off of your energy, and it's amazing what getting a pedicure/manicure, hair cut, new products to try, etc. does to the mood. Every mother, father, carer, etc. needs some self-care here and there.
items for baby's development
Nurses do a fantastic job, but they can't be everywhere and do everything (they're superheroes, but not that type of superhero). We purchased a sound recorder and recorded ourselves reading all her books to her, we recorded albums, messages from family members around the world, prayers, you name it, and asked the nurses to play it whenever we weren't around. We were told it was a huge hit with her, and it helped ease our minds that she was taking comfort from our voices when we weren't around. Baby's also get bored of staring at the ceiling all day. Her aunt purchased a night light that illuminated the room in stars and moons. Sterling. Was. Obsessed. Oh, and don't get us started on her pizza.
Everyone knows hospital food sucks. We learnt that Chick-fil-A and Frank's RedHot makes anything delicious, but sometimes a meal outdoors, or a delivered meal does wonders.
arts & crafts
We coloured a lot. I took up painting during one stay. Fun fact, I purchased the most difficult colouring book I could find when Maddie was pregnant. It just happened to be on Japanese-style art, of course it had to be full of Kabuki references. Staying mindless helps block out the beeps and dings.
and many other helpful deeds...
Any philanthropists/donors interested in helping Sterling's Foundation get off the ground are encouraged to email
Join us for a celebration of Sterling's life, and for the launch of her foundation!Gary Aquatorium
Sterling had 9 surgeries, and needed many blood transfusions, she was also immunocompromised and needed weekly IVIG infusions made from plasma of blood donations.
To make an average yearly dose of IVIG for patients who need it, it takes 250 liters of blood plasma. To make 1 liter of plasma, four whole blood donations are needed. [source]
Your blood donation is more than just blood for many people.
Help us keep the blood banks full!CrossPoint Church
Moda were kind enough to put on a "Sterling Strong" day, they put on a braid bar, did up-do's, face painting, music, raffles, (and more) and the money raised was donated to Sterling's Foundation! Thank you, Moda!Moda Beauty Bar 10921 Miami St
Ava Micheal Beautique put on the original "Sterling Strong" day, it included a braid bar, up-do's, music (and more), and the money raised went to Sterling's medical bills. Thank you, Ava Micheal Beautique!Ava Micheal Beautique 120 S Main St
We are collecting 1 million pop tabs to help give back* to the Ronald McDonald House. The Ronald McDonald House helped our family by providing a "home away from home" for us. By raising 1 million pop tabs (or 789.27 lbs), the Ronald McDonald House in Oak Lawn will add Sterling's name to their Thanks A Million tree.
* "[...] United Scrap Metal, buys the pop tabs [...] at market rate and makes an additional charitable contribution. While the price of aluminum changes regularly, we receive an average of 40 to 55 cents per pound." [source]
You can drop off bags of pop tabs/ring pulls to the following locations:
Help share Sterling's story by wearing some Sterling Strong Swag 💁♀️
Music was a huge part of Sterling's life even before she was born.
We knew her birth and the first few weeks were going to be chaos. We had both read about baby's exposed to music in utero were soothed by the same music as newborns. It was worth a shot! Lacksley Castell's "Speak Softly" was Sterling's record of choice (she was probably bored of hearing it by the time she was born). We played it whenever she would have any procedure. We think it helped calm her, and us.
A lovely music therapist at the hospital offered to customise "Speak Softly" into "Speak Softly Sterling" and asked us to write our own lyrics specifically for Sterling. It was a hit! It's since grown and we produced 3 songs together, Sterling's heart beat is in a few of them!
We only made 3 songs at the hospital, and we would like to make enough to make an album. Sterling's own reggae album, with songs we played to her throughout her life, with new lyrics to reflect her story. Reggae is the music of healing. If you're interested in working together, please email
If Sterling could talk now, she would say these were some of her favourite songs (or maybe her parents' favourite songs?). I wonder if it's because reggae is relatable to Sterling's life; beautiful songs about love, happiness, and sorrow wrapped up in an upbeat tempo, and enjoyed for decades.
May they bring you smiles/wiggles like they brought us.
Let's keep Sterling's
legacy a jammin'