Zane Treguboff is 5-years-old, the youngest of three boys and the light of his mother's life.
"He's got a personality that's for sure, yes, he does..as you can tell, he is just awesome. He's one of the great joys in our life and he just makes us happy everyday that he's with us. I couldn't imagine our life without him," she said.
Zane was diagnosed with Lissencephaly at 6-weeks-old. It's a rare brain malformation which causes the folds in the brain to appear smooth. Many of his neurons didn't connect during womb development.
"He is at a 3 to 4 month level. He can roll from front to back and that's about it. He doesn't communicate. He does in his own way and he is basically almost blind. He is pretty much moderately deaf," said Zane's mother. "They gave us 'til 2-years-old because seizures are really bad with these kids and respiratory illnesses are really bad too. He's gotten to 5 and we are hoping to make it to 6 and we are just going from there."
Throughout this journey, the family has relied on Phoenix Children's Hospital for much of their medical needs -- from his pediatrician to specialists, to their palliative care program headed by Dr. Tressia Shaw.
"The Phoenix Children's Palliative Care Program is designed to work with children who have life limiting or life threatening illnesses," said Shaw. "We recognize that when you have a child who has this kind of an illness, multiple aspects of your life are affected by it, so you may need support from a social worker, you may need support from a child life specialist, chaplain or a doctor and each of us bring a different skill set to the table."
The program can be in place from diagnosis until death. Helping the family and child with goals they may have along the way, pain and symptom and management and if needed, hospital care.
"Having palliative care involved does not mean we are giving up hope. Palliative care can coincide with life prolonging therapies, coincide with still pursuing other treatments. And you know, sometimes we are surprised with how kids do, given the disease the child is facing," said Shaw.
Withe the support and guidance, the Treguboff family is living each lasting day with zest.
"We play, he hangs out with his brothers and we take him everywhere we go, so if we go to dinner, he goes with us. Our nurse is there with us all the time..she is part of our family too," said Zane's mother.
You can contact PCH for more information on their palliative care program.