The final installment for 2013 for PHers who inspire... the previous editions are HEREJustin is a recent high school graduate with a story to tell. This past June, I was lucky to hear that story first hand. It is a story of incredible ups and downs, of defying the odds, of uncertain times, and of triumphs.
Born in Colorado, Justin is one of triplets, and he also has Down syndrome. At birth, the family learned he had pulmonary hypertension.
As can be common with Down syndrome, Justin underwent open-heartsurgery at just four months old. Because of complications, he spent a subsequent five weeks in ICU.
By age 2 ½, Justin was on oxygen constantly. Doctors told his family that the elevation in Colorado was too much for him, and that the family must re-locate somewhere closer to sea level. They chose Connecticut, within distance of Dr. Robyn Barst at Columbia in New York City, and that is when Justin’s journey with pulmonary hypertension really began.
Dr. Barst was the preeminent physician addressing pulmonary hypertension at the time, for the general patient population, but especially with pediatrics. Justin and his family went through a lot as they tried to fight the disease, and Dr. Barst was with them every step of the way.
Justin has had two pace makers and been on many PH medications. For a long time, Flolan saved his life. Being a child with a backpack that carries a pump attached to an IV into your heart is not easy by any stretch, but Justin persevered for 12 years. The family tried him on Remodulin too, although that was not as successful. Then, on a second attempt with Flolan, Justin hit a critical point. The drug is extremely powerful, and it can also be extremely toxic. For Justin, this meant a severe drop in platelets, which led to lung bleeds, amongst other multiple complications.
And then, the miracle came for Justin. An inhaled medication called Tyvaso had just hit the market, and it was decided that Justin should try it. Tyvaso, combined with Adcirca, turned things around. Justin’s health started to improve. He competes in the Special Olympics – and medals. He graduated high school in June 2013, and is now in a transition academy. His parents tell me they hope that someday he will attend college.
So, when to everyone’s happy surprise, Justin reached his senior year in high school and the time came to choose a senior project, Justin chose “Giving Back to the Organizations that have Shaped My Life”. He chose the Pulmonary Hypertension Association and The Special Olympics.
Justin worked tirelessly on his project. Two bake sales, and a pasta dinner, were all smashing successes. Through his efforts he was not only able to raise money for causes so important to him (an impressive $3,000 in total), but he was also able to spread a great deal of awareness as well.
I didn’t get this story from an adult well versed in medications and PH. Justin told it himself. As I sat in an auditorium at Shepaug Valley High School, I don’t think I ever stopped smiling or shaking my head in wonder. Justin is a remarkable person. He had clearly put so much into his project and presentation, and presented it with a level of articulation more seasoned speakers can lack. And I would be remiss if I didn’t mention that he gives the best hugs too.
He told his whole medical story with such fineness. His pride in his accomplishments beamed through, as well they should. Justin has defied every odd. He works to give back to the communities that supported him in his fight. We can all learn a thing or two from this remarkable young man.
|Justin presents me with the check for PHA|
|Justin's Family: Sister Lindsey, Justin, Dad Russ, Mom Lori, and Sister Jenni|
In closing, the funds Justin raised for the Pulmonary Hypertension Association will go to the Robyn Barst Pediatric Research Fund. As Justin said, “ Because of Dr. Barst and her incredible work I am alive and able to graduate! Thanks to Dr. Barst, I and thousands of others with PH are living longer and better lives. She is gone but her work will live on forever!”