This mom I just met faces so many challenges everyday, but she is such an inspiration. Her son has Angelman Syndrome. He could start choking and stop breathing at any moment. He can never be left alone, ever. Can you imagine how terrifying that would be--going to the grocery store and worrying that your child mind have a potentially fatal attack while you're gone? This mom lives and breathes for her six-year-old. He may have a severe disability, but he is a beautiful angel in her eyes.
Here's the story I did for WHOI. The script is underneath the video because I think the audio is really low. I am not sure why.
We all know how much trouble it causes when we are forced to change doctors. It takes awhile to establish a good rapport and feel comfortable. We're taking a glimpse at the life of Tyler Abraham, a young boy from East Peoria who has a rare condition called Angelman Syndrome. For him, getting a new caretaker is a lot more than an inconvenience:
A six year old in the Heart of Illinois who can't speak, walk or eat without a feeding tube is making his feelings known. His mom Jenny Abraham said, "People ask me, how long does he have? I say, I don't want to know. I just want to enjoy every moment of the day with him as much as I can."
Tyler Abraham has a chromosome disorder called Angelman Syndrome. He has a tracheotomy, oxygen tank and several monitors beside his bed. Tyler's mom Jenny is his voice. She understands his language, the way he blinks or moves his feet are cues that he needs something. Jenny said, "When he was born he was in the NICU for three months. I waited and waited to take him home. I had to wait for the agency."
That agency, OSF St. Francis Medical Center in Peoria provided two high skilled nurses who can suction Tyler when he starts choking, give him oxygen, and put him on his ventilator at night. Jenny said. "He just loves his nurse. The way he cries when they leave, it's just the most exciting thing in the world."
But Tyler and Jenny are getting read to say goodbye to their nurses. OSF is no longer providing the Home Ventilator Program. The Director of Public Relations and Communications Jon McKee said, "We take such good care of our patients. Sometimes there are tough decisions to be made and sometimes those decisions have to be made so we can continue making good decisions and great care for others."
Tyler and four other patients will be provided new nurses through another company in town that specializes in this type of care. McKee said, "I'd like the folks who are watching tonight to understand and appreciate the type of care that has been given to these families for the length of time they've been with us. we've appreciated them and I think it has been very mutual."
Jenny has accepted what's happening, but she she still worries the transition will be too much for her fragile son. Jenny said, "What's going to be the future for my son? Are they going to take my son away from me? It's just been hard. I will miss my nurses. They're like my family." Tyler can't tell us what he's thinking, but his mom knows he understands what's going on... she just hopes his fun loving spirit will get them through this difficult transition.
OSF serves 10-thousand people in home care services in Illinois and Michigan. The healthcare organization is shifting its care due to bigger demand, meaning the nurses will see several patients a day instead of spending an entire shift at one home.
Thanks to NewsAnchorMom reader Carmen for letting me know about this story!
-NewsAnchorMom JenMethodist Medical Center's new online healthcare program MyMethodist eHealth is the secure link to your doctor's office that lets you request appointments, order prescription refills, update your personal health record, and more. Sign up for MyMethodist eHealth here.