It was the Wednesday before playoffs, and although most players were heading to lunch and preparing for the upcoming games, John Negrin was heading to Boonville, NY to sing to his newest friend, Owen, with the KEYS program.
In January 2005, Owen was diagnosed with Tetrasomy 18p just days before his first birthday. Tetrasomy 18p is a genetic condition in which there are two copies of chromosome 18, creating an isochromosome that causes a wide range of medical and developmental problems. It’s an extremely rare condition; in 2005, there were only two medical journal cases and less than 100 people in the world who had been diagnosed.
“We were told he would not walk or talk, and that we should simply just take him home and love him. And that’s what we did,” explained Owen’s mother, Jill.
This year, Owen celebrated his 12th birthday not only walking and talking, but attending school and living life with endless smiles.
After multiple episodes in the hospital these past couple of months, however, the Save of the Day Foundation partnered with The KEYS Program to help brighten Owen’s spirits. The KEYS Program, located in Sherill, NY, provides family respite days, music outreach, and sibling support to families who have been impacted by pediatric cancer and life-threatening illnesses.
Knowing Owen’s love for music, the Save of the Day Foundation invited Johnny to share his musical talents with Owen. Not only did Johnny have a fun-filled afternoon with Owen and his family, but also wrote Owen his own song about all of the adventures they had.