Identified with sickle cell disease as a 6-month-old, Tristan Lee has confronted lots of challenges over his 37 years of life. However from a younger age, he additionally discovered tips on how to flip these trials into triumphs.
At age 9, a stroke as a result of his illness left him paralyzed on the left facet. He needed to re-learn tips on how to stroll, speak, and use the lavatory.
Lee discovered the stroke to be each a curse and a blessing. Whereas pals had been making enjoyable of him due to his variations, the newfound and undesirable consideration led him to pursue appearing — which ultimately turned him to modeling, designing garments, and strolling the runway.
“I do know persons are taking a look at me,” Lee mentioned, recalling his social difficulties after leaving the hospital. “So I’m going to offer them one thing to take a look at.”
Now, 28 years later, the Williamsport, Pennsylvania, native is utilizing his style design background to boost cash and produce consciousness to sickle cell illness.
A baby who was as soon as teased for trying totally different is now a person lately honored as one in all six “patient heroes,” and can signify North America within the Uncommon Illness Day worldwide marketing campaign led by Eurordis-Rare Diseases Europe.
Lee’s profile, together with these of the 5 different uncommon illness heroes in Australia, Malaysia, Brazil, Kenya and Norway, are featured within the Uncommon Illness Day world campaign.
Uncommon Illness Day was launched by Eurordis 13 years in the past, and has since change into a world occasion bringing larger consciousness to uncommon ailments. It began on Feb. 29, 2008, a uncommon bissextile year, and is now celebrated on the final day of February yearly.
U.S. participation in Uncommon Illness Day started in 2009, and extra 100 nations had been individuals final yr. This yr, due to COVID-19, many events are on-line solely.
“Uncommon Illness Day is an alternative to enlighten the public about points affecting uncommon illness sufferers akin to overcoming well being inequities, together with the lack of information round uncommon circumstances and challenges sufferers should face to even get an correct prognosis,” Peter L. Saltonstall, president and CEO of the National Organization for Rare Disorders (NORD), mentioned in an announcement to BioNews Companies, which publishes this web site.
Earlier than Lee grew to become the face of sickle cell illness and uncommon illness in North America, he first starring position was as a 9-year-old Johnny Appleseed in group theater shortly after his stroke.
When he was 14, his mom signed him up with Barbizon modeling college in close by Harrisburg, Pennsylvania, the place he discovered the ins and outs of modeling, paying shut consideration to garments, design, and sketching.
“Throughout college, once I was alleged to be doing math or one thing, I daydreamed and simply sketched totally different shirts, pants and simply no matter impressed me,” Lee mentioned.
He additionally dressed impeccably. From center via highschool, all he wore was Tommy Hilfiger, incomes him the nickname of Tommy Boy. His different moniker was Divo, as a substitute of the feminine diva. The title caught, and it’s now a part of his style line, DiVo Stars, which raises funds and consciousness for sickle cell illness.
He introduced 5 sketches to the style design coach Valerie Beggs some seven years in the past. Within the following months, these 5 sketches grew to become the idea of an area style present and jump-started Lee’s profession on the runway, and his advocacy for sickle cell illness. He went on to provide high-quality style reveals in and round Williamsport, a metropolis identified primarily within the U.S. as the positioning of the Little League World Collection.
After working his manner up the style world totem pole, Lee confirmed a 35-piece couture assortment as a part of New York Trend Week in September 2018, with the purple, black, and white theme of Sickle Cell Awareness Month. Income generated from each style present DiVo Stars produces goes on to sickle cell organizations.
Other than DiVo Stars, Lee continues to mannequin with a incapacity company and to behave, and is now trying to begin with voice-over work. He credit his religion in God and encouragement from two praying grandmothers with getting him via every day, between his busy skilled schedule and his unpredictable battle with sickle cell illness, which might strike at any second.
“I actually must dig into my religion and actually belief in God to simply take my life and do nice issues with it,” Lee mentioned. “He simply continues to type of present up and present out for me, and that’s how I make it.”
Initially given a 20-year life expectancy, Lee says he’s outlived it as a result of he’s all the time been surrounded by educated docs. Rising up, his greatest docs got here in groups of three, a comparability Lee likes to make to the Holy Trinity of Christianity — the Father (God), the Son (Jesus), and the Holy Spirit.
A staff of three helped him recuperate from his stroke as a baby. Now his main care and two specialist physicians are all with Divine Windfall Hospital in Williamsport. One physician particularly, Charles Kofi Agbemabiese, a specialist in hematology and oncology, was instrumental in serving to Lee transition from pediatric to grownup care.
“I used to be blessed to be with him for 14 years,” Lee mentioned.
Whereas the look after sickle cell illness has drastically improved lately, no “common treatment” exists, as Lee places it. The aim, he mentioned, is to ensure infants born with sickle cell are cured immediately, and in a position to be freed from this illness for all times, an goal that resonates with uncommon illness communities world wide.
In an NORD interview forward of Uncommon Illness Day, Lee mentioned that he’s on “borrowed time,” given his prognosis. He spends as a lot time as he can along with his household when he’s not working his manner up within the leisure business, sending good morning texts to his mother, and waking up subsequent to his husband of 4 years, Andrew Schlachter.
“Having a uncommon illness like sickle cell, and understanding that each second, each breath counts. I simply attempt to focus and hone in on everyone who’s essential to me,” Lee mentioned.
As Uncommon Illness Day rounds the nook, his lasting message as a “affected person hero” is to, as NORD’s Uncommon Illness Day emblem places it, “present your stripes” and be your self.
“There may be typically the place it’s arduous and also you wish to quit, however simply don’t. As a result of the truth that you might be dwelling this life and also you had been chosen to stay this life simply proves that you’re nice, and you’ve got greatness within you,” Lee mentioned.