‘As a mom, I wanted to grab her and hold her and I wanted to scream and cry, but I was so petrified because I didn’t know what was happening.’

St. James

“I’m a mom from Long Island. I have three kids and they’re all pretty much a year apart. Paige was always my wild one. She was my number three and I let her do what she did. I let her beat to her own drum. She wore whatever she wanted. She was just so full of life and fire, and I adored it. I adored every piece of her. I always would say, ‘You’re only six once…let’s do it!’ Everything was great. I had the most perfect life that anyone would ever dream of.

“On January 8th of 2018, my life was just flipped upside down. I sent all my kids off to school. Everybody was happy, healthy. I pulled into my driveway and got a phone call from the school nurse saying that Paige was there with a bad headache, she was crying a lot and I needed to come. Paige was not what they call a ‘frequent flyer’ in the nurse’s office — she just wanted to rock out with her friends. I figured she’s got the flu or something.

“I didn’t even make it to the end of my block and the school nurse called again and told me that they had called 911 and that Paige was unresponsive. I pulled into the school, and they had the front doors open for me. I ran in and Paige was having seizures and the EMTs came in and were struggling to get her vitals. As a mom, I wanted to grab her and hold her and I wanted to scream and cry, but I was so petrified because I didn’t know what was happening. It was like an out-of-body experience and everybody’s faces were so white and everybody looked terrified.

“By the time we got into the hospital they were on top of her, and she was coding. This all happened in minutes. They put Paige in the room, and it was like the hospital stopped. They finally got her well enough to get in for an MRA scan and found out that she had a severe brain bleed which they called an arteriovenous malformation, an AVM. They attempted to do surgery. They did say to us that the situation was very grave, and they really didn’t know what the outcome would be. They came out and the surgeons were actually crying — and we knew. We went home and it was a nightmare. Our lives are never the same, we’re not the same people. I’m a shell of who I am. I just try to be a good mom, a good wife, and a good friend.

This is my life’s journey. Once it’s done, I’ll sit back and grieve and rest. But until then, I’m after a murderer. And I’m going to lock it up.

“About a year and a half after, we went in to see the neurosurgeon that did the surgery because I needed to know what the hell was going on. And that’s when he told us that it was an AVM that develops in utero, but there’s no way of knowing until it ruptures like what happened with Paige. He said it’s a ticking time bomb but if we knew it was there, it was operable, and she’d be alive and most likely very healthy. I looked at him and was like, to myself, ‘How in this day and age with all of this preventative care and screenings is this possible?’

“That led me to talking to people all over the world, obsessing about this. I would say 98% of the people that I’ve spoken to said the same thing: We were told we were born with this, and if we knew, it was operable. Now we’re either alive and severely disabled or we lost our loved one.’ My girlfriend pushed my hand and said, ‘You need to do something about this, and I know you can.’ So, I said, ‘I’m going to start a foundation and change the world.’

“I was a one-man show for a long time — connecting with people about this disease. A local mom, who’s a nurse, reached out and said, ‘I’ve been following your story and I work in a brain center. We think that we can help you with developing a screening program and early detection.’ She said, “We’ll call you in a couple of days.” There I was, I’m on the phone with a neurosurgeon who is like the most brilliant man ever. He said, ‘I can help you and we’ll do it together.” To date, I think we’re just under 200 screenings. We’ve worked together for an educational program for first responders.

“I also created an AVM awareness program within the school systems. I’m going to be fighting to have a law passed. We’re going to call it Paige’s Law. I personally feel that pediatricians should be talking to people about this disease. You should be educated on it. And when you’re ready, if you choose, you should have your child screened and scanned. Getting it out there, that’s the biggest part. I do feel in my heart, it will become the new way. This is my life’s journey. Once it’s done, I’ll sit back and grieve and rest. But until then, I’m after a murderer. And I’m going to lock it up.”

‘When the fire happened, all I thought about was my old stuff; the family history in there. All my father’s books were all damaged.’

Bay Shore

“The fire happened on the morning of March 29. I had been feeding cats in the backyard and some had kittens. I let some in the house. I was able to get a mother cat and three kittens out because they were close to the door. A police officer saved two more kittens and a cat.

“There were four adult cats and five young cats that perished in the fire. There are still cats outside and we go to the house every single day to feed them. Some people gave me shelter, bedding and cat food and I worked with a rescue place that spayed and neutered them. Things like that show you people’s humanity to help you in times that are difficult.

“I’ve lived in this house all my life because it was my parent’s house. I’m 61, I was born in Bay Shore, my roots are in this community. My father served during WWII and was in active combat duty. When he enlisted, he was already a husband and father of two. He used to write my mother many letters. He was very descriptive, so they would censor the letters in case they fell into enemy hands. When the fire happened, all I thought about was my old stuff; the family history in there. All my father’s books were all damaged.

I looked inside the desk, sure enough, there was the box of my mother’s letters. It wasn’t touched by fire or water. That has brought me some comfort; some hope that we’re going to get through this.

“We had two very old pictures in decorative frames of my great grandmother and great grandfather, and that’s gone, those you can’t replace. The floor collapsed in two of the rooms, so I still haven’t been able to find things. I had an old secretary desk. It has a bookcase on top. It had the panel that opens up. We saw it in the room; it was blown to pieces because of the water pressure. But I looked inside the desk, sure enough, there was the box of my mother’s letters. It wasn’t touched by fire or water. That has brought me some comfort; some hope that we’re going to get through this.

“I just want to be able to do something with the house and be able to reconstruct and continue living in my community. I’ve had four contractors come to the house, and all of them said this house doesn’t have to be knocked down, but we will have to gut the whole house. They’re the experts and they’re saying they can do it. I’m still very hopeful.”

Interviewed by Rachel O’Brien – Morano

‘Kody didn’t come to us an Instagram star. It kind of evolved because we started going to Doodle Romps.’

Smithtown

“We got Kody in the summer of 2013. I refer to him as my firstborn. He’s my fur baby. This was the first dog that I had as an adult living on my own with my husband, and my husband never had a dog growing up. We worked together good as a team. And he has become such a dog person. He’s obsessed with him as much as I am.

“Kody sleeps in bed with us. He eats first. Kody didn’t come to us an Instagram star. It kind of evolved because we started going to Doodle Romps, mostly Long Island based at first. We would meet people that were also very much into their Doodles and loved their dogs as much as we loved Kody. It was a great way just to network and meet people.

“And Instagram was a good way to keep the connection going after the meetup. Then it kind of expanded into New York City. And that turned into birthday parties for dogs. Before I knew it, I was going to a dog birthday party every weekend. Then we started getting invited to other creative dog things like Bark Mitzvahs.

I have a job that doesn’t afford me a creative outlet. A lot of the things I’ve done with him, especially with Instagram, have been expressing myself creatively.

“As we were going around, we were meeting businesses that loved Kody. They wanted him to do modeling for them and Kody evolved into this natural in front of the camera. He would just sit there, smile, and wait for the right shot. He kind of became a trained model, which is funny. Kody modeled for a company called Brooklinen and had his photo all over the subways. We just had something recently with Target that we did. One year, we entered the Fort Greene Halloween Dog Costume Contest, which is kind of a big deal. It’s onstage…hundreds of people. I made him Oscar the Grouch and he won first place. It was incredible. He got such a roaring response from the crowd. That was a really memorable moment with Kody.

“I have a job that doesn’t afford me a creative outlet. A lot of the things I’ve done with him, especially with Instagram, have been expressing myself creatively. It brought me such joy to have an idea and then put it together with the right clothes, props, and lighting. We have a lot of fun doing it. Kody has a lot of fun doing it. And then it’s great when people love it!”