We met Jake and his family during the final days of his cancer battle. Though facing the unimaginable, the family somehow managed to give off an overwhelming spirit of HOPE. Jake’s family’s needs did not match the needs of the families we traditionally help. The challenges they were facing were not with paying their mortgage or utilities, but rather the parts of having a child at home on Hospice care that no parent is prepared for. After speaking with Jake’s father, we began to truly understand how we could best help their family. He shared with us that the family had trouble balancing the 24-hour care Jake now required while also trying to spend precious time with their son, as a family. Additionally, Jake was unable to walk and had been moved to a hospice bed – which his parents had difficulty transferring him in and out of due to the bed being intended for adult, not child, use. After learning of these challenges, we arranged for a more suitable hospice bed to be delivered to their home and provided the family with a grant for in-home nursing care. The nurse not only helped to provide Jake’s medical care, including tube feedings and medication administration, she also assisted with the cleaning associated with that care, which gave the family the gift of time with Jake. Jake was just 9 years old when he passed.
In his healthy times, Jake was an avid baseball player who donned the number 21 on his uniform. Inspired by Jake, his family and the grace and mercy by which they live, Project 21 was born. This pediatric hospice specific program provides end-of-life grants to parents whose child is in the final days of their cancer battle.
If you are in need of assistance while your child is receiving home hospice care, please email [email protected] for information on how to apply.