Family of 7-Year-Old Duluth Girl in Need of Heart Transplant Raising Awareness During American Heart Month

DULUTH, Minn. — A local 7-year-old is waiting for a heart transplant and could be for several more months.  With February being American Heart month, this little girl and her family are relying on the help of family and community to bring awareness and hope to others in need.

Roya Snyder has always been active in ballet and sports, and she enjoys playing with her friends and older sister. But, hidden beneath the surface was an undetected congenital heart condition that would turn her family’s life upside down.

“May 5th last year she had a cardiac event on her school bus on the way home and went to the hospital and the recommended us to go down to Children’s Hospital in the cities and they told us that she had three types of cardiomyopathy and will need a heart transplant,” said Roya’s father Derek Snyder.

After the Mayo Clinic said the same thing, Roya returned home to Duluth where the Snyders tried to keep life normal for her. On the transplant waiting list, Roya asked the Make-A-Wish foundation for something a little more long-lasting than a vacation.

“Roya wished for, um, a puppy. We have three cats and we added a little puppy, Doxie. She’s been featured a lot with Roya in pictures and gets to actually go to the Mayo and visit Roya in her hospital room,” said Snyder.

For six months at home, she had nurses, heart medications, and also a backpack with a line feeding her meds while at school. But being at home came with some risks.

“The scary thing with transplants, especially with heart transplant, is if you have a cold or a flu and your heart comes, you probably won’t get that heart. You’ll miss your window because you’re sick. So that was pretty scary for us to have her here. Have her going to school. It’s flu season,” said Snyder.

As summer turned into fall, Roya started feeling worse. After spending Thanksgiving and Christmas at home, Roya checked into Mayo at the beginning of January where she will stay until she receives a new heart.

“It’s a week long process of 20, 25 appointments of getting transplant ready. All these different tests that Roya had to go through. A lot of shots and pokes and blood pressure checks, and a lot of intense things that she had to go through as a 7-year-old,” said Snyder.

Heart transplant expenses have to be paid for ahead of time so the Snyders started learning about organizations that could help them financially. One that stood out to them was the Children’s Organ Transplant Association, or COTA.

“You can do a lot of different things, but the thing we liked about COTA was that for people to donate or businesses to donate, it really gets the awareness about how important organ transplant is, and heart transplant, and how hopefully more and more people do donate or become donors,” said Snyder.

Awareness and support also comes in other ways.  Both Lester Park Elementary and Duluth East High School have worn red for Roya. But that is just a snippet of the love and support they have received when they’ve asked.

“It’s not easy to ask for it. It’s not fun to ask for it. It makes you feel vulnerable. It makes you feel a little bit exposed. But the outpouring of support from other restaurants, from other businesses, it’s been overwhelmingly wonderful and hard to accept,” said Snyder.

Derek recognizes that because he co-owns Lake Avenue Restaurant in Duluth, his community circle may be larger than that of other families in need of help. It makes him want to help others wherever he can.

“We are not the only ones that are going through this right now, but we are being a little bit more public about it because we want to help raise awareness cause we’ve seen some pretty amazing kids that are fighting really hard right now and need all the help they can get,” said Snyder.

When Roya does receive a new heart, Derek says it might only last her 15 to 20 years so she will likely need additional transplants in the future.

“She’s going to have a real, real long journey ahead of her, but hopefully a real, real wonderful journey, and someone will give Roya the gift of life through a tragedy,” said Snyder.

While the Snyder’s wait for that fateful day, they continue to learn more about what is happening in the field of heart medicine. The research in knowledge and technology give them additional hope for Roya’s future.

You can see more of Roya’s story at COTAforRoyasHope.com.