Jacob Hartshorne (27) of Mount Pleasant, Mich. was born with CHARGE syndrome. CHARGE stands for “Coloboma of the eye, Heart defects, Atresia of the choanae, Retardation of growth and development, and Ear abnormalities and deafness,” as stated by the CHARGE Syndrome Foundation. Jacob is deaf and mostly blind, he is mute, has mental development delays, and has scoliosis, because of these disabilities Jacob has to be under 24/7 care for his safety.
Jacob lives next door to his childhood home where his parents still currently live. He moved out when he was 21 to start gaining a sense of independence. Since Jacob needs 24/7 care the Hartshorne’s employ students as caregivers. Jacob currently has 17 caregivers. This is a lot, but it gives Jacob different people to interact with and different variations to his daily scheduled routine. The family has noticed an improvement in Jacob since he started living by himself.
“We like to use students about they are enthusiastic and they are studying in the field of disability. Each person brings a new perspective. It would have been easier for Jacob if he has the same person every day from 8-5, but we can’t pay the benefits,” Nancy Hartshorne, Jacob’s mother, explained.
In addition, Jacob has to receive Testosterone shots every Wednesday because his body does not produce the needed amount, if any at all. Since his caregivers are not trained to give the shots they have to go to the doctors office to have it administered. Jaco’s caregivers have to give him daily physical therapy and 2 baths a day. Jacob is a very sensory orientated person, touch is everything and he likes to look at the vibrant colors of pictures. He also enjoys the water and spends a lot of his time in the tub, his jacuzzi or his parent’s pool in the summer time.
Jacob also works at The Pixie and The Redbird, not for money but for a sense of purpose. He also has his own business called Jacob’s Cans, where he sends bags to the neighbor and collects cans to raise money to send to the CHARGE Syndrome Foundation.
There is a lot of love that Jacob receives from his caregivers and he gives it right back. There are bad days, good days and days in-between, but he is living his life to the best of his ability with the help of other for his eyes and ears.