Meet Jack P: 2020 Family Advocacy Week Champion
Jack is participating in Speak Now for Kids Family Advocacy Week from August 10-14, 2020. Through this special event, Jack and his family will share information about his health journey, Yale New Haven Children’s Hospital’s role in providing Jack with necessary health care services, and why the public and our elected officials must invest in the future of kids like Jack.
Jack was born with hypoxic-ischemic encephalopathy, a brain injury caused by oxygen deprivation to the brain. He underwent several tests and examinations, including an MRI to find random damage spots across his brain and visits with specialists to determine his level of function.
“We were devastated when we learned of Jack’s condition,” says Pam, Jack’s mother. “The doctors were unsure if he would survive, and if he did, he might never walk or talk.”
Over the first few months, specialists at Yale New Haven Children’s Hospital discovered chronic kidney disease, a need for blood platelet transfusions and probable blindness. He was later diagnosed with cerebral palsy and requires complete care for all his needs. He is also wheelchair bound, relies on a g-tube, and has seizures and chronic kidney disease.
“We are grateful for HUSKY, Connecticut’s Medicaid program,” says Pam. “It helps with hospital costs, but not for home modifications that were needed to allow Jack to live at home. “
Jack is happy, responsive, loving and always smiling and giggling. He loves to interact with other children. He enjoys music, swimming and horse therapy.
“All of these things have shown amazing results; however, insurance and school do not pay for all of them and I wish more services and therapies were covered for Jack,” says Pam. “His condition is all we know, and we will do anything that we can to make his quality of life the best it can be for him.”
Today, Jack is 11. He’s had a lot of help along the way and currently sees 12 different specialists.
“Without Yale New Haven Children’s Hospital, he might not have survived,” says Pam.