Grant Ely, of Dauphin, was not supposed to make it to his first birthday. He has celebrated three so far.
"We were told he would probably never walk or talk, but he is definitely doing far more than anyone ever expected him to do," his father, Justin Ely, said.
Grant was born with a rare brain malformation that causes him to have seizures, sometimes up to 40 a month.
"You can never know how long 30 seconds is until you see your kid going through a seizure that lasts a minute, five minutes, 10 minutes," Justin Ely said. "I would take on every seizure for him if I could. I would trade places in a heartbeat."
Grant is already taking five anti-seizure medications, but they are not completely stopping the seizures and are causing side effects.
"He used to be able to roll over. He would try to crawl. He used to say 'Mama' and 'Daddy.' He would eat by mouth," his father said. "Ever since having to be on these medicines, he has regressed. He no longer tries to roll. He no longer tries to crawl."
Justin Ely would like to try a newer medicine that is not legal in Pennsylvania.
"Hopefully, we will have access to medical marijuana cannabis oil," he said.
This is not the first time a Pennsylvania parent has publicly asked to have access to medical marijuana, but Ely is not your typical parent. Ely is a state trooper.
"The work here at home is far more stressful than what I deal with at work," Ely said. "I worry about Grant not waking up in the morning."
The six-year trooper says some people are immediately against the medicine as soon as they hear the word "marijuana."
"They cannot get past the word or the stigma that is attached to it," he said. "I wish people would not be so opposed to this just because it comes from marijuana."
Governor Tom Corbett has said he would veto any bill supporting medical marijuana, but recently announced he would support legislation to allow research of Cannabidiol, or CBD, an oil derivative of cannabis that is used to treat seizure disorders in children.
Still, it could take some time for that to happen in Pennsylvania.
"When Grant is seizing and he is having a bad day, it can get overwhelming just because I know in parts of the country there are children who are taking the cannabis oil and it is helping them and here we sit in Pennsylvania with no access to it," Ely said.
However, some parents are getting their hands on the medicine illegally. A Pennsylvania mom reached out to abc27 and wanted to share her story, as long as her identity was protected.
"I would probably lose my children," she said. "I would probably go to prison for the rest of my life if I get caught. I am getting it illegally. It is a whole plant CBD oil, but I do not really want to go into detail about how I am getting it, because I need to protect my source."
The woman says she has been giving the medical cannabis oil to her child three times a day for about a month, as well as a paste she says is a little higher in THC, the compound in marijuana that produces a "high." She says it is helping with her child's seizures and behavior.
"I am seeing major eye contact. She is in there," she said. "Before, she was just in a shell. Now, she will look at you. She will get up, and come and touch you, and put her face in front of you and it is just totally amazing."
The woman said she felt the need to come forward after Corbett announced he would only support research of the medical marijuana oil. She says the governor should support all forms of medical marijuana.
"He forced my hand in a way that I had to come out now, because I want people to know not everybody is going to respond to CBD only. Plus, there are other people that cannot wait," she said. "The dementia patients, the Alzheimer's patients, our veterans cannot wait. I mean, there are 22 veterans a day committing suicide in the United States and it's not fair. They served our country. They kept us free and we are are tuning our back on them."
The woman says she will continue to get the medicine illegally.
"I need to do what is best for my child and if my government and my state is not going to back me, I have to do what I need to do for my children," she said. "It is working and I do not want to stop."
Breaking the law is not something a man sworn to enforce it can do.
"I do not look negatively upon them for what they are doing for their child. It is not an option for me," Ely said. "If it gets to the point that I have to move to Colorado to give my son a better quality of life, that is what I will do. I just want him to have the opportunity to use it, and if it works, it is going to improve his quality of life."
Corbett says he is currently working on legislation to legalize research of the oil form of medical marijuana.
Senate Bill 1182, which would legalize all types of medical marijuana, is scheduled for another public hearing at the Capitol on June 10.