Jesse’s Story | Marty Lyons Foundation

How the Foundation’s Work Affects Others Like Jesse

Client: Marty Lyons Foundation
Industry: Non-Profit
Video Type: Fundraising, Recap
Messaging Type: Unscripted, Doc Style

About This Video Project

We produced this video sharing the story of Jesse, a former Marty Lyons Foundation wish recipient. This interview style video was shown during the 3rd Annual Marty Lyons Foundation Gala at the Bourne Mansion in Oakdale, NY. We used interviews to tell the story and client submitted photographs to help illustrate his battle. Listen to Jesse’s heartbreaking experience as told by his mother Joanna, who was honored during the night of the gala. With over $43 million raised and operations in 14 states, the foundation has supported over 8,500 families. Please help support the foundation in their mission of over 42 years fulfilling wishes for children with life-threatening illnesses.

Transcription

Jesse was so incredibly bright for a two-year-old. I’d bring him to church, and I said, what did Jesus do? And he said, he turned the water into apple juice. And I said, and what was that called, Jess? And he’d say, America. And when he was born, I remember I held him up, and I said, he’s yours. Do with him whatever you will. So sorry. Sometimes life happens, though. When Jesse was not quite three, my mom was watching my kids, and I went out to do something for Christmas for Jesse. And as I’m walking away, I hear a knock on the glass, and he goes, bye, Iya-yu. And I turned around, and I smiled, and I went, Iya-yu, too. I didn’t know that would be the very last time I’d ever hear his voice. My grandfather was going outside, so my mom yelled, Dad, the baby’s coming with you. But he didn’t hear her. And so he came back in 10 minutes later, and she said, you know, where’s the baby? And he said, I don’t have the baby. So she figured he was in the backyard playing, you know, in the sandbox or something. So she went out back, and Jesse, Jesse. And she couldn’t find him, didn’t see him. Now she’s starting to panic, screaming his name, running around the circle trying to find him. And she looked down to her left, and she realized that the ladder was down to the pool. My mother runs across the yard, and she’s screaming, God, no, please, God, no. And she climbed up the ladder, and the ice was broken, and the water was black. And she jumps in the pool, and she just starts pushing the ice aside. And there was my Jesse, floating face down. My sister-in-law picked me up, and she just kept saying, I don’t know, I don’t know what happened, because, you know, she didn’t want to tell me it yet. We got to the hospital, and I just jumped out of the car as she was slowing down. And I walked in there, and my whole family was there. And I said, what are you all doing here? And my brother said, Joanna, don’t you know, Jesse drowned? I blacked out. They finally stabilized him, and they let me in. And he was just laying there in his diaper, just staring straight. He was completely stripped of everything. He couldn’t sit up. He couldn’t talk. He couldn’t eat by mouth. No neck control, nothing. They told me, this is it, it’s not going to get any better, you know, that he had bilateral brain damage. I remember a psychologist, the way she described Jesse was that he’s a prisoner within his own body. She felt that he understood far more than what was going on around him than what they originally thought. I would walk in the door, and I’d go, hello. And as soon as he’d hear my voice, he’d go, ah, ah, ah, you know, making this noise. I mean, I was his whole life. However, it also created a very difficult childhood for my other son, Justin. That was not healthy. All the plans that you have for your children, or for yourself, it just, it’s devastating on a family. When Jesse was five or six, I called a wish organization. I told them about Jesse, and she said, well, where does he want to go? And I said, he can’t communicate in any way. And she said, well, then we can’t give you a wish. You could tell me that your son wants us to pay your mortgage. How do we know that’s what he really wants? And I don’t remember what I said after that, but I know I got off the phone very quickly. I have a friend, and she was so angry that she went home and told her husband about it. Well, her husband ended up putting in Jesse’s name to the Marty Lyons Foundation. I was at my sister’s house, and my phone rang. And so this guy says, hello, Mrs. Dougherty, I’m from the Marty Lyons Foundation, and something about a trip. And I said, yes, that’s right. And in a month, it will end up on my credit card. And boom, I hung up on the guy. Phone rings again. I look at the number. It’s the same number. I couldn’t believe the nerve of this guy. And he said, Mrs. Dougherty, I want to talk to you about giving you a trip. And I went, boom, and I hung up on him again. Now I’m steaming mad. And the phone rings again, and I thought, the nerve of this guy. And before I could say anything, he went, Mrs. Dougherty, wait, please don’t hang up on me. I’m trying to give you a trip for free. Your friend, and he gave me their names, put in a request for a trip for you with the Marty Lyons Foundation. And then right away, I had flashbacks of the first phone call, and I just said, whoa, wait. I said, he can’t communicate. He can’t verbally tell you where he wants to go. And I’ll never forget, he said to me, Mrs. Dougherty, this is not just about Jesse. This affects the whole family. He said, where do you want to go? For someone to ask where I wanted to go, I never thought about it. First thing that came to my mind was why I wanted to go on a cruise. And he said, fine, that’s where you’re going. The next thing I know, we were booked on a cruise to Puerto Rico, Tortola, and St. Thomas, three stops that were just amazing. And then we get there, and Carnival treats us like we own the ship. Here we are boarding the cruise, and Jesse is 18, Justin’s 16. We come on, and they must have, you know, had some kind of staff meeting or something because they said, it’s King Jesse. And they called him King Jesse the whole trip. And we couldn’t walk anywhere without being stopped by staff, or at least staff saying hi to Jesse by name. We all felt so special. We go into our cabin, and I think it’s going to be just a cabin, right? I open the door. It’s a suite. It’s huge. It was like a fantasy. My other son, Justin, was having a ball with his cousin, and they just had free reign of the whole ship. He grew up in a tornado. You know, there was so much going on. So it was so wonderful to see him happy and having fun and smiling and jumping up on the stage and doing the Macarena and all this stuff. It made my heart feel so good. My sister Ginny and I were out for the evening on the ship, and my mom was staying with Jesse. And then we decide at one point that we’re going to cut through the casino. And I look to my right, and there’s my mother with my son in a wheelchair, and they’re gambling. She’s got them at the slot machines, and the two of them, she’s got hand over hand pulling down the arm for the one-armed bandits, you know, hearing ching, ching, ching, ching, ching, ching. You know, coins are falling down. My mother’s very serious. She keeps putting in the coins. I said, Mom, what are you doing? She said, Jesse was bored. We had to go out. It was so funny to see Jesse there, happy as can be. I mean, he was having fun. Life was really nice for that week. Looking back, really, it’s the best time of our lives. So over the next 18 years, we just continued to take care of Jesse. He started to get much worse, and it was much harder for him to breathe. This particular week, I was with Jesse around the clock. I held him a lot. I sang to him all the time. And then by Sunday, all of a sudden, he took a real turn. And Sunday evening, my entire family were at the house. He was surrounded by everybody that just loved him. And I was holding him tight, whispering to him how much I love him. All of a sudden, I just realized that he had passed. And I miss him so much. Even now, my heart is just… will never be the same. Never. To this day, I’m so grateful for what the Marty Lyons Foundation gave us. We still talk about that trip, and what a great time we had. It’s a memory that we’ve carried with us for over 20 years. It was so wonderful. It’s more than a wish. It’s a gift. I tend to think that it came from the goodness of the hearts of people that we will never meet. They have no idea the impact their generosity had on my life. And still, to this day, 20-something years later, I still look back and I smile, and I laugh when I think about certain stories, and still feeling that joy I felt. And how you put a price on that, it’s priceless. Especially now that I don’t have my little bird with me, my Jessie, it’s wonderful. It’s just wonderful to have that memory. God bless everybody who helped.

To learn more: https://martylyonsfoundation.org/