Local eight-year old Jarom Waldron (left) was diagnosed with a rare condition called Salt-Wasting Congenital Adrenal Hyperplasia when he was just 10 days old but that hasn’t stopped him from being an Honor Roll student at West Green Elementary and a multi-sport athlete. Jarom and his family are fighting to raise awareness for the condition. Pictured above are Jarom, his siblings Kassidy, Brody and Landon, his mother and father Chris and Amber, and State Representative Dominic LaRiccia.
Straight-A Student, Multi-Sport Athlete Jarom Waldron Powers Through Life Despite Rare Adrenal Condition
A straight-A Honor Roll student. A multi-sport athlete. An avid ATV rider, outdoorsman and Boy Scout. All of these things perfectly describe eight-year old Coffee County native Jarom Waldron. But what you wouldn’t know just from a simple glance is that Jarom suffers from a very rare and potentially deadly condition known as Salt-Wasting Congenital Adrenal Hyperplasia (CAH), a condition he has battled since birth, and a condition for which he and his family are now fighting to raise awareness in hopes of not only helping others, but also to see protocols changed in the medical profession.
Jarom, the son of Amber and Chris Waldron, was diagnosed with Salt-Wasting CAH at the young age of just 10 days old, this after losing more than two pounds after he was born at the healthy weight of nine pounds and four ounces.
According to his parents, doctors informed the Waldron family that Jarom was literally “dying,” and was given just 24 hours to live.
Doctors told the Waldron’s they had a spot waiting for Jarom at Egleston’s Hospital for Children in Atlanta, where he was treated and remained for several days. When he arrived, his sodium level was zero and his potassium level was “through the roof,” according to his dad, Chris.
A heel prick revealed Jarom’s Salt-Wasting CAH condition, a rare and genetic condition that only affects one out of every 15,000 people. With this condition, the adrenal glands do not make enough aldosterone, which causes the bodies of those diagnosed to be unable to retain enough sodium.
After several days in the hospital, Jarom was released, but his battle had just begun.
At just three months old, Jarom suffered from another scary incident, then just three months later while he and his family were in Las Vegas, Nevada, he had another incident.
But the little warrior overcame the odds with each and every incident, and now is a typical, rambunctious soon-to-be nine year old. Though he has to take two medications, Hydrocortisone and Fludrocortisone, daily, Jarom has succeeded in every endeavor he has undertaken, including being a straight-A Honor Roll student and a multi-sport athlete.
“We still make one to two trips to the emergency room every year, but we realized early on that Jarom just had to be a normal kid,’ said his mother Amber. “Doctors told us early on that we always have to be prepared and aware of his condition at all times. His medicine levels are frequently monitored and changed to meet his needs, but he hasn’t ever let this slow him down.”
Jarom wears a bracelet at all times that includes the name of his condition, his medication levels and what emergency medical professionals should do if he has an episode.
Should a serious episode with Jarom occur, he has to be injected almost immediately with Solu-Cortel, a drug that is not carried in emergency medical vehicles and is not allowed to be administered by EMT’s. Only Jarom’s parents can inject him with the drug, an aspect of his condition that is a reason why he and his family are fighting to raise awareness.
“Solu-Cortef is not carried in ambulances, in fact, EMT’s aren’t even allowed to administer the drug to Jarom should he have an episode, even with our permission,” said Amber. “It’s very scary to think that if we were involved in some type of accident where Chris and I were incapacitated that Jarom may not be able to get the drug in time to save his life.”
With that in mind, the Waldron’s reached out to State Representative Dominic LaRiccia, who has joined the family’s fight to raise awareness for Salt-Wasting CAH.
LaRiccia has since been conducting research with the Department of Public Health and has met with other state officials, including Governor Nathan Deal, in hopes of assisting individuals who suffer from the condition and their families.
LaRiccia commented, “State legislators mandated about 18 years ago that infants be checked for Salt-Wasting CAH via a heel prick after birth, something that absolutely saved Jarom’s life. Now with additional research, maybe one day it can be mandated that all emergency medical vehicles readily carry Solu-Cortel and those emergency medical professionals will have the legal ability to administer the drug to those in need.”
Jarom has had multiple incidents that involved him being injected, but through his perseverance, he remains “rough and tough.”
Recently, West Green Elementary school staff and personnel joined in Jarom’s fight to raise awareness, selling t-shirts to raise money for the cause.
Jarom’s parents couldn’t be more proud of his school and all the faculty, staff, students and parents that have assisted them. They also speak highly of LaRiccia and the effort he has taken to assist.
“So many people have shown us love and support through all of this and raising awareness is the key to not only helping Jarom’s way of life, but all of those who live with his condition,’ said Amber. “Dominic has taken our fight all the way to Atlanta, and the great people at West Green Elementary couldn’t be more supportive. It really is overwhelming.”
LaRiccia added, “When it comes to a situation as serious as this, awareness really is so important, and I am committed to assisting in increasing awareness for Jarom, his family and this condition in hopes of helping future generations.”
Over the last couple of years, Jarom and his family have traveled to other areas of the country to meet with other children and their families that deal with Salt-Wasting CAH, something that has provided another support system and additional knowledge about the rare condition.
He and his family also ask that anyone who supports his cause to please contact your local and state officials via telephone or letter in hopes of seeing changes in medical protocol.
Jarom will soon complete third grade at West Green Elementary and is currently in the middle of baseball season, a sport he truly loves. He said his favorite team is the Washington Nationals.
When Fall rolls around, you’ll find Jarom starring on the football field, rooting on his beloved Georgia Bulldogs, and back in a West Green classroom excelling in academics.
Because in the end as his parents said, Jarom is just a normal kid. A normal kid with a will that most can only wish they possess.
Jarom is the son of Chris and Amber Waldron, and the grandson of Jerry and Toya Waldron of Coffee County, Carolyn Grey of Nevada, and Larry and Jeanie Kohntopp of Idaho. He has three siblings, Landon, Kassidy and Brody. He is a member of the Church of Jesus Christ of Latter-Day Saints.
The Enterprise sends prayers to Jarom and his family and urges the community to join in his fight against Salt-Wasting CAH. Please see page 5-A for additional photos of Jarom.