At only 24 years of age, Casey Arvel is fighting ALS. We first met him and his wife at their home in Napoleonville a few months ago as they were expecting their first child. They’re now seeing the beginnings of a new life, while another goes through drastic changes.
When Casey Arvel Junior came into this world, there was joy and terror. Sydnie Arvel had been in labor for much longer than she anticipated. When the day came, Sydnie says she wasn’t prepared for what was happening.
"My doctor comes in and says what we need to do right now is take him out fast. No one was telling me exactly what was going on, but they started wheeling me to the surgery room," said Sydnie.
When it was time for delivery the doctor told, her she would have to do so through an emergency Caesarian section.
"I never heard him cry the whole time I was on the table. After I was done with the surgery they told me his cord was wrapped around his neck and he wasn't breathing on his own," said Sydnie.
"The first time I saw him he still wasn't breathing. I was still afraid," said Casey Arvel, Sr. "The first thing that popped in my head was I could leave with no baby. I carried the baby for 9 months and he could be taken away from me," said Sydnie.
Fear turned into relief when nurses revived the newborn.
"It was everything I could ask for. It was perfect, no more worrying, I knew they were both ok and we can have our family... finally," said Casey.
“The baby brings so much joy to us and it makes me feel like I fell in love all over again. Each day my love for Casey and the baby gets stronger. And I know the baby being here is giving Casey the strength to fight,” said Sydnie.
It's a fight against ALS or Lou Gehrig’s disease. The mysterious condition robs patients of their ability to move, speak and to breathe. There is no cure yet, and the disease often ends in death. When we first met the couple last November, Sydnie’s pregnancy was labored with worries.
“It's hard to think about my future, because I’d rather live just day by day because I don't know what it's going to be like in my future, now that we have a baby on the way, I don't know if Casey is going to be talking or walking in 9 months," said Sydnie last November.
It's been almost a year and half since Casey was diagnosed with ALS. In that short amount of time, his arms have gotten considerably weaker he used to get around with a walker, but is now in that mechanized wheelchair and he's noticing he is losing his voice. It's something Sydnie says keeps her up at night.
"I think my only thing I'm terrified of is him losing his voice. Because I don't think I can live without him being able to talk to me because I need to hear his voice," said Sydnie.
"I try not to think about it, but I worry for her and worry about not being able to have our conversation with my son. But, he gives me strength to keep fighting. So I believe I'll still be able to talk, I'm not going to lose that,” Casey says.
Sometimes words are unnecessary. As they sit in their living room, the sound of the baby’s breathing can be heard. It's enough, listening to life take form. Occasionally, wind is broken.
“You heard that? He farted,” said Casey through belly laughs.
These moments are welcomed blessings. At 24 and 22 respectively, their young lives have been burdened by ALS, which on average, turns deadly within two to five years from the time of diagnosis. Sydnie and Casey understood that when they decided to have the baby. It was also in the back of their minds when choosing Casey Junior as his name.
"It was like if I ever did die or whatever, he would carry on a piece of me, but he would've have regardless." said Casey.
Born Easter weekend at 8 pounds, 3 ounces and 21 inches long, this little boy carries the weight of his family's future. It’s a future his parents pray will not be touched by the same cruel disease.
"It's not supposed to be genetic, but it does cross my mind if he will one day get it or not. I pray that he doesn't, because I couldn't live with both of my babies having it,” said Sydnie.
"I couldn't have found anyone stronger than her, or willing to do what she does. I hate putting all that stress on her, her having to take care of me and a newborn baby. She's strong," said Casey.
“Like so many mothers and fathers, they have high hopes for their child. This family has specific dreams. And it doesn't hurt to dream big.
"He might be a doctor, he might find a cure for ALS," said Casey.
With Casey now confined to a wheelchair, the family is struggling to get around. The added cost of a baby is compounding the cost and search for a wheelchair accessible vehicle. The Arvels say a wheelchair-friendly van or truck will give them mobility without having to physically lift the motorized wheelchair onto the back of their pick up. If you’d like to help, follow the link below: