‘Poker Run Ride for Baby Eli’ fundraiser, including live music and food, set for October 6

Extended family hopes to help with financial difficulties family may be facing with three children with congenital heart disease

All families face difficult challenges from time to time. However, some families seem to have challenges that stack up in insurmountable proportions. Such is the case of Scottie and Alicia Jones from Keavy, who are facing a mountain of medical conditions, and fears for their children’s health.

Scottie and Alicia were married in 2012 and had two daughters, Skylar who is 6, and Alee who is 3; and then on August 5th of this year they proudly welcomed a son, Eli.

When their second child, Alee, was only 11-days-old, she started experiencing difficulties linked to an incurable congenital heart disease (CHD). CHDs are the most common type of birth defect.

Physicians at University of Kentucky Children’s Hospital diagnosed her with Truncus Arteriosus (TA) with Ventricular Septal Defect (VSD)Truncus Arteriosus (TA). TA happens when there is an abnormal connection between the aorta and the pulmonary artery. It allows oxygen poor and oxygen rich blood to mix and travel through the body. The mixed blood, which does not have as much oxygen as it should, results in breathing problems, poor feeding or eating, tiredness, enlarged liver, extreme sleepiness, and bluish colored skin, lips and nails (cyanosis).

TA occurs in less than one of every 10,000 live births.

VSD is a separate congenital heart defect that almost always accompanies TA. VSD is an abnormal hole in the wall (septum) between the right and left chambers of the heart.

Alee immediately underwent lifesaving surgery at Cincinnati Children’s Hospital, and has since had two open-heart surgeries, five stents and several visits to a cardiac catheterization laboratory.

In December of 2018, the Jones family found out they was expecting Eli. Concerned that Eli may have health issues as well, they went for extensive testing and found out that Eli, too, would be born with the incurable congenital heart disease TA.

They were told that the likelihood of having two babies with TA was extremely rare; about the same odds of hitting the lottery twice in a row.

Two weeks prior to Eli’s birth, the family relocated to Lexington to be closer to the best care available.

When he was born, the care team was able to plan his birth around his CHD. They immediately rushed him away to the Cardiac ICU where he received an implant to fix his heart defect. However, since the surgery his health has been like a rollercoaster ride.

Eli experienced complications and a couple days after went into pulmonary hypertension crisis, which is the leading cause of death in CHD patients. He was put on a ventilator and suffered a collapsed lung, had several chest tubes inserted, and a couple days after that contracted a Staph infection in his blood.

Following intense medical treatment for the infection, Eli’s care team discovered that his chest wound wasn’t healing correctly because of a malfunction of the implanted device, and the infection. He had to have his chest reopened where the infection was removed and everything was repaired.

After being on and off the ventilator multiple times, he is now stable and his health is heading in the right direction.

Because the heart repairs for TA are completed using artificial materials, both Alee and Eli will require multiple surgeries as they grow, until they reach adulthood.

Since the Jones family now had two children with a known CHD, they decided to have their oldest child, Skylar, medically evaluated. It was discovered that Skylar too has a CHD. She has a Bicuspid Aortic Valve (BAV), which occurs when the aortic valve only has two leaflets instead of three. Some people can have this condition and never know it, while in others it can develop into serious, even life-threatening complications.

Scottie’s family members heard about the family’s plight and, realizing how difficult this must be on their finances, decided to step up and do something to help. The family has organized a fundraiser called “Poker Run Ride for Baby Eli” to help raise money.

The ride will be held Sunday, October 6, at Briar Creek Park in Williamsburg. Registration starts at noon and the ride will leave the park at 2 p.m.

Anyone with a street legal vehicle is invited to attend the ride, and the pace will be set with motorcycles. The ride will conclude back at the park at approximately 5 p.m., where there will be a free meal for ride participants after the ride (The riders will be given a food voucher at registration which they will have to turn in for the food).

Everyone is invited and encouraged to attend the ride and set up a lawn chair to enjoy free live music, food, and fellowship.

Entertainers Joseph Cureton, Justin Siler, Tim Harrison, Highway 204 Band and Tidal Wave Road are donating their time and talent to help the fundraising cause.

There will be a silent auction held during the dinner and musical entertainment as well as a 50/50 raffle, prizes, kids games and face painting.

In addition, there will be both a cornhole tournament and a horseshoe tournament. The winning team receives half the pot.

All proceeds will go to help the Jones family.

For more information about the fundraiser, call Cindy at 606-261-8927, Sharon at 513-417-0135, Phyllis at 606-515-8454, or Kay at 606-515-8530.