Our names are Jamie and Jennifer Barone and this is our 14 year-old son, Kyle. Kyle has multiple diagnoses, including Cerebral Palsy, profound hearing impairment, seizure disorder and asthma. In the summer of 2010, Kyle was also diagnosed with decreased lung function. His pulmonologist candidly told us that if Kyle were to get really sick or if he were to get a severe case of pneumonia, we may be faced with the decision of placing and leaving him on life support or letting him go. Unfortunately, in the fall of 2010, this nightmare came true and Kyle did get a severe case of pneumonia, was in the ICU at Children’s Hospital and had to be intubated. Painfully, we started having the conversation about what we were going to do should Kyle not be strong enough to be extubated. It was at this point that one of the ICU nurses introduced us to the Wings program. Fortunately, Kyle did get stronger and was able to be extubated and eventually came home.
We have continued to participate and benefit from the Wings program ever since Kyle was in the hospital in 2010. One of the Wings nurses visits Kyle in our home every other week to check and see how he is doing. When Kyle has been sick, the staff has helped us avoid multiple trips and possible admissions to the hospital by changing PIC lines, drawing blood and corresponding with the doctors. It is wonderful knowing that a nurse is on-call 24/7 and can assist us if need be.
Kyle also really enjoys receiving visits from the expressive therapist and a volunteer through the Wings program. Kyle is a very social person and just loves to be around people. He can no longer attend school daily due to his poor immune system and these visits sure do cheer him up. He begins smiling as soon as he sees their cars pull up.
This past April, on his birthday, Kyle participated in a “Joyful Celebration” with a “Friends of Wings” volunteer. She arrived at our house with balloons, a cake and a gift for Kyle. As you can see from his facial expression, he was quite excited. Kiddos like Kyle often miss out on things like going to friends’ birthday parties and slumber parties but it sure did make him feel special when someone came to his house to celebrate with him. As parents, it feels great to see your child so happy.
After our experience in 2010 when Kyle was intubated, we realized that probably the most important thing that the Wings program will ever do for us is still to come, hopefully many, many years from now. When the horrific time comes for Kyle to leave us, we know that, if at all possible, we would like this to happen in our home, not at a hospital. It gives us the slightest bit of peace to know that the Wings staff will assist us during that difficult time and do everything possible to honor our wishes. We know that they will be there to support us every way they can and, for that, we are grateful.
The Wings program and “Friends of Wings” has been, and will continue to be, a huge blessing to our family.
Jennifer and Jamie Barone
"My son was fearful of dying. With Expressive Therapy, I now have tools to communicate with him. He, too, has new ways to share his feelings without speaking them. He's actually happy and bubbly after our time with the Wings' therapist." Cindy (mother of Graham, age 15, suffering from Neuromuscular Disorder)