Restrictive cardiomyopathy- Imagine you’re reading this newspaper and struggling to decipher what in the world that is. Take that a step further and think for a minute how you would begin to tell a two or three-year-old that is why she is sick. That’s exactly what Jacob and Carly Kornegay had to do in January, 2016. Their oldest daughter, Brylynn Kornegay was given that diagnosis that dreaded day almost two years ago now. From Dothan to Pensacola to Shands in Gainesville before they had the answer they had been looking for.
Now, 22 months later, Brylynn and her mom, Carly Ham Kornegay are sharing a room in Shands Hospital, three and a half hours away from dad, Jacob and sister Addilynn who will be two years old in April. Those circumstances are difficult under any conditions but Carly says Brylynn is handling it like a trooper. Carly says she knows the holidays are here but she realizes she needs a new heart so she’s content for the most part, “They have been very good to us here, I stay in the room with Brylynn because I couldn’t bear to leave her and they’ve not put us on the long-term floor. While on this floor, there is a playroom where she can go and see other kids. We try to keep her schedule as normal as possible. I make sure she’s up in the mornings and out of her pajamas and dressed just like if she were at home.”
Brylynn is number one on the list for a heart transplant as of now. The glitch is that she is not what is considered a life-threatening candidate. They recently had a nine-month old heart that was to go to Brylynn but another child who was in a critical state received that heart. Carly and Jacob are very understanding of this in that they are grateful that she has moved to number one and Carly said, “If we were in a critical situation, I would hope that she would be put ahead of someone who was not critical.”
Once a heart for Brylynn is available, the doctors at Shands will perform the surgery. Following the surgery, Brylynn will have to remain in Gainesville for a minimum of four months and a maximum of one year. She must remain close to Shands until the team of doctors can be assured her body has accepted the heart. During that time, the Kornegays will have to be apart as a family which is stressful to say the least. As of now, the family in Marianna travels each weekend to spend time as a family with Jacob and Addilynn returning after the weekend to Marianna, leaving Carly and Brylynn at Shands.
Brylynn is aware the holidays are approaching and that it is a time when there have been family celebrations. To make her stay more homelike, Shands has a room that Carly has reserved for Thanksgiving and Christmas so that the whole family, extended to include grandparents, can spend the holiday together. She has a four-foot Christmas tree she will be putting up in Brylynn’s room with some decorations around the room. This has more than excited her daughter.
Meanwhile, expense continue to mount for the Kornegay family. Jackson County, as always, had been good to respond to a family in need. There is an account set up at Jackson County Teacher’s Credit Union. If you would like to help this family, you may make a deposit there. Tell them it’s for Brylynn Kornegay and they will make sure it gets to her. There is also a chicken dinner fundraiser for Brylynn. The chicken dinners will have smoked chicken, green beans, baked beans, rolls and a slice of cake made by James Brooks in every plate. Tickets for the gun raffle can be purchased at McCoy’s in Marianna. There is a Facebook set up “A Heart for Brylynn” to keep up with Brylynn’s progress.
Brylynn loves to receive cards and mail. They can be sent to Brylynn Kornegay c/o Shands Hospital at 1600 SW Archer Road, Gainesville FL 32610. Add Fourth Floor, 44 PEDS, Room 4419 to the address.
The family asks for prayers above all else for Brylynn.