Luling toddler battling ‘one in a million’ heart condition
Community chips in with fishing benefit
Brad and Casey Townsend sit on the hospital bed with their son, Noah. Noah has a rare disease called cardiomyopathy, which is a deterioration of the heart muscle that eventually leads to heart failure. He is currently awaiting a heart transplant.
He was small for his age and although he was not meeting benchmarks at the same time other children were, his family wasn’t too concerned. But then he began to have noticeable issues. His feet and hands would turn purple and his dutiful parents would take him to the emergency room whereupon the problem would disappear and he would be cleared by ER doctors as well as a cardiologist.
It was not until he began having fainting episodes that Noah’s parents and doctors knew that something was terribly wrong. The first time Noah fainted, he was taken to the hospital but doctors were unable to determine the cause.
Then it happened again.
This time, Regina Cyrus, Noah’s aunt, said doctors found an abnormal heartbeat.
"Unfortunately, when he made the second trip to the ER he was in a full blown arrhythmia," she said.
Noah was admitted to the hospital for the first time this February and more in-depth tests were ordered. Doctors soon found out that Noah had a rare disease called cardiomyopathy, which is a deterioration of the heart muscle that eventually leads to heart failure.
"They said one in a million. It is really, really rare and even more rare in young children," Cyrus said.
Immediately upon the diagnosis, Ochsner put Noah on a heart transplant list. But the Townsends were told their insurer would only pay for a transplant done at a hospital that performs 10 or more of the procedures per year.
Within a matter of days the Townsends found their lives taking a much different path than they ever could have anticipated - they would have to transfer Noah to Texas Children’s Hospital in Houston.
"They airlifted him. Literally strapped him in a bed, put him in a plane and airlifted him the next day to Texas Children’s," Cyrus said.
Casey and Brad made the trip with their son not knowing how long they would be gone or if their lives would ever get back to normal. Newly unemployed, the Townsends devoted themselves to Noah’s illness.
"For two relatively young individuals to have to pack up their lives and move blindly to Houston with the hope that these people can save your child’s life...they’ve been inspirational," Cyrus said.
Now, six months later, the Townsends are still in Houston and Noah, after some complications and four open-heart surgeries, is still on the waiting list for a heart transplant. For now he is being given a regimen of medication and relies on a ventricular assist device to help his failing heart pump blood throughout his little body.
Cyrus said although a lot of different factors have to match up for Noah to receive a heart transplant, such as blood and tissue type as well as size, they hope it is not long before it happens.
"There are two other kids who in the last week and a half have received hearts and were listed shortly before or shortly after him," she said.
However, for any good news there is also bad news. For children who receive heart transplants at such a young age, the rate of eventual failure is high.
"Often kids who have heart transplants will develop coronary artery disease and there is nothing they can do short of an attempt to stave it off and maybe address it," Cyrus said. "But what they have told us is that at some point in his life he will need another heart transplant."
In addition, if Noah receives a heart he will have to take a cocktail of medications to keep his body from rejecting it.
Cyrus said although they are happy that they have gotten as far as they have in Noah’s treatment, the family is eager to come home.
"The hope is that they will be able to come back here and at least be able to return to some semblance of normalcy and go back to their house," she said.
For now, the Townsends are still waiting and the medical bills are piling up.
To help the Townsends with Noah’s care, the organizers of this year’s Fishing for Frankie tournament have made him their beneficiary.
The annual tournament has been held for the past four years with proceeds going towards locals who are suffering from chronic medical problems. The first beneficiary, and the tournament’s namesake, was Frankie Champagne Jr. For the last two years, the tournament was held to benefit Mike Diaz, a double-lung transplant patient from Luling.
Audrey Raziano, the tournament’s co-chair, said they did not hesitate to name Noah as the beneficiary this year.
"I actually had dealings with the little boy’s grandma and when I found out the condition he is in it was a unanimous decision," she said.
The tournament is scheduled to begin Aug. 10 at 4:30 a.m. and will be held at Pier 90 in Luling.
Two-people fishing teams can sign up for $100 now until the day of the tournament. Half of the entry fees will go towards Noah’s benefit and the other half will be split by the top teams. There will be a $10 per boat optional big bass pot that will pay back 50 percent.
The event will also feature activities for those who do not fish, but would like to participate. Organizers will have food and drinks available for purchase and will also hold a live auction.
For more information on how to enter, contact Raziano at (985)785-8411 or (985)703-0135 or April Sellers at (504)756-7020. You can also email firstname.lastname@example.org for more information.
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