Adam and Mandy Forkner decided a long time ago that they wouldn't lose their son, Tommy. Tommy and his twin brother, Travis, arrived three weeks prematurely, and Tommy ended up spending the next two weeks of his life in the Neonatal Intensive Care Unit (NICU). Tragically, Travis ended up passing away at just 6-weeks-old. Then, as Tommy was getting ready to celebrate his first birthday, he was diagnosed with Marfan Syndrome, a genetic condition affecting connective tissues in the body. Adam also has Marfan Syndrome.
"For my husband and me, it was a terrifying time," said Mandy. "After losing Travis and Tommy being diagnosed, we had a lot of sleepless nights."
As Tommy grew, his parents realized he wasn't able to hear. They soon discovered he had a large brain tumor behind his left eardrum. Tommy underwent three surgeries to remove the mass and reconstruct the ear. During this time, he also met with Blank Children's Infectious Disease specialists to help control repeated ear infections.
"Some months, we make between 8-10 trips to the doctor," said Mandy. "Adam and I keep a notebook to help keep each other informed."
At only 6-years-old, Tommy has experienced more than most can image. But, he keeps smiling with his positive outlook and caring demeanor. Tommy willingly explains his hearing aids to his classmates, showing them it's ok to be different. At such a young age, he openly speaks about Marfan Syndrome and how it and the tumors affect his daily life. He's a natural social butterfly, enjoying being outside, playing basketball and spending time with his grandpa Tom.
"Tommy has the biggest heart of anyone I know. If he sees someone cry, he'll cry too," said Mandy.
The Forkner family takes things day-by-day and remains vigilant about necessary care and medicine. Mandy says that through this, her family values the little things so much more.
"Automatically, we tell our kids how much we love them," said Mandy. "We never take anything for granted."