ELKHART, Ind. Most 15 year old boys are thinking about getting their drivers license, girls and sports.
But for a young Elkhart teen, who has been hospitalized at Memorial Children's Hospital since December, those are things on his bucket list that will have to wait.
Zachary Talley, has been battling a rare neurological disorder called Ataxia Telangiectasia since birth and it is starting to take its toll.
Like any kid, he wants to go home. But going home with all his health problems won't be easy.
His mom, Brigid Steinhagen, who has three other children, says Zach is a fighter.
But she says now that he is on a ventilator going home will be a real challenge. She says his disorder is genetic and she and Zach's dad were, unknowingly, both carriers. "It's an extremely rare degenerative muscle disease that affects the genes and his muscles and over time he will deteriorate and his muscles will become weaker. Children with A-T have a life expectancy of 20 years."
Brigid sleeps at the hospital with Zach and only leaves his side when she has to work. Zach was hoping to go home three weeks ago but it's good he didn't. Right before he was released he was complaining of stomach pain and had to have emergency surgery to fix internal bleeding. Brigid says had she taken him home he would not be here today.
Zach can't wait to get home to be with his siblings and go back to Elkhart Memorial where he is a freshman. While Brigid has always been Zach's primary caregiver, works two jobs and has insurance, she says she can't afford to make the changes to her home that would help with Zach's care.
And even though doctors and therapists have written letters saying Zachary needs a bathroom on the first floor of the home where he sleeps, Brigid says the insurance company denied the family saying it was not medically necessary.
So this determined, single mom says she will continue to do what she has been doing for years, "I bath him, I care for him, I lift him. We live in a two story house so when he has to have a bath I carry him upstairs to bath him and carry him back downstairs when I am done. I just am on my own."
But she adds, the ventilator will make that more challenging, "This vent is his life support. If something should happen to the vent or become disconnected, it's his life."
Like any mom, Brigid will continue to fight for Zach and hopes to get him home and back to school soon. And she says she'll do her best to get him whatever help he needs to make the rest of his life happy and comfortable, "He's just a very social kid. I would do it every single day, any day, with any of my kids."
And in spite of the reality of Zach's disease, Brigid has dreams for her son and prays for him all the time. Even hoping for a miracle, "The miracle of getting better and be able to come off the vent again one day, and not have to deal with that."
If you think you have a talent or trade that might help Zach and his family out you can contact Brigid through his Facebook page.
Also, his Boy Scout troop is holding a spaghetti dinner fundraiser on March 30th at 1pm at the Elkhart Moose Lodge on County Road 6. There will be a full spaghetti meal, complete with dessert, a silent auction and lots of fun. It is 8 dollars for adults and 5 dollars for children 12 and under.