Stand By Eli: Finding A Cure For A Genetic Disease With Sam Kadkhoda

AIH 74 | Stand By Eli

 

For all the steps medical science has made in terms of diagnosing or treating various conditions, there are still so many mysteries left unsolved. Dealing with unknown illnesses and genetic diseases can be so difficult, especially when it involves your child, because there are just no expectations or ways to deal with the process. This is the case for Sam Kadkhoda, the mother of Eli and the Founder of the Stand By Eli Foundation. Sam tells Sean Entin the story of her son’s initial diagnoses all the way to the founding of the Stand By Eli Foundation. Tune in to this episode to listen to this story of resilience, love, and most of all, hope.

Listen to the podcast here:

Stand By Eli: Finding A Cure For A Genetic Disease With Sam Kadkhoda

Can you imagine that one of your loved ones had been diagnosed with a disease, which has no name and no doctors know what’s going on? I know that’s a dramatic question to kick things off with, but this was the experience of our guest. Our guest’s name is Sam. She’s the mother of an amazing young boy named, Eli. He was diagnosed with a rare genetic mutation, which literally has no name. None of the medical community knows what’s causing it or on the flip side, what can be done to find a cure. What I love about this story is how passionate Eli’s mom is for advocating for her son’s well-being. I know it’s like, “She wants to advocate.” As you read the blog, it’s not always that simple and straight forward.

Sam talks about overcoming the stress and the shame around talking openly about your son having a genetic disease. She said, that for a while she tried to hide it. She tried to make everything seem okay, but it was bottled up inside. As soon as she opened up and started becoming more public on talking about what’s going on with her son and her family, it opened the floodgate for this overwhelming amount of love and support. She’s setting the example for what it means to stand up and advocate for your son or for someone you love. As she tells the story, they ended up setting up an entire non-profit dedicated to finding a cure for Eli and all of the other children who are suffering from this rare genetic disease. Go to StandByEli.org to learn more about Eli’s story, and also to donate and support the cause.

Welcome to the show, Sam. How are you doing?

Thanks for having me. I’m good.

It’s nice to have you here. Thank you for making the trip out here.

I’m excited. You were close enough for me to make the trip out here.

Seany, how are you doing over there?

I’m doing good.

How are you feeling?

I feel great.

Sam, will you start by letting our community know a little bit about who you are and your story and why you’re here?

I’m a mom of a special needs kid, who we didn’t find out was the extent of how much of his special needs kid he is until we went through from doctor to doctor looking for answers. Eli is my second-born son. I have a son who’s seven years old. His name is Aaron. They’re both amazing in their own ways. Eli was born totally normal. Everything was fine until we started noticing he was missing his milestones. Everything was late like rolling, sitting up, walking and talking. We were new to this. No one talks about their kids being late on doing anything because God forbid your kid is imperfect. We didn’t know what we were supposed to do. We didn’t know something’s going on. We’d go to our doctor’s visits and everything was delayed and they’d go, “Let’s give it a couple more months. Let’s give it six more months.” It wasn’t until my older son’s preschool teacher who would see me and Eli every single day at pick up and drop off. She came up to me one day and said, “Don’t be upset. I’m going to tell you something. This is not normal what Eli’s going through. He’s not walking. He’s not talking. You need to have him evaluated.”

It takes a village to raise a kid. Now it takes a village to save a kid. Everybody needs the help to save these other kids. Click To Tweet

How old was he at that point?

He was eighteen months old. At eighteen months, most kids are walking, talking and running. They are big kids at that point. Eli wasn’t doing any of that. He was in a stroller all the time. He wasn’t saying anything. He would make sounds and we weren’t sure what was going on because our doctor would say, “Give it a couple of months.” When she told us that, it was this wake up of, “Stop being in denial. Go do this.” We immediately got him evaluated. It turns out he had what’s called Global Developmental Delays, which means he was delayed in speech. He was delayed in his gross motor skills and his fine motor skills. He was behind on almost every level compared to his own age.

When we found out that his delays were global, meaning it wasn’t just speech, it wasn’t just his motor skills. My husband and I were like, “Something has to be causing this. This isn’t like a fluke.” We went looking for answers. We went from neurologist to neurologist. I went to a developmental pediatrician and everything. Everyone’s like, “I’m sorry, I can’t tell you anything more than he has global developmental delays.” We kept pushing. Finally, our neurologist at the Cedars was like, “Why don’t you go see a geneticist? They are the next line. Maybe they’ll be able to give you an answer.” To us, that was the road that led us into finding something for Eli because we ended up doing a whole-exome sequencing, which is when they unravel your DNA and find out all of your genes if every gene looks okay. It came in a couple of rounds. The first round of genetic testing was to see if he had any of the common problems that kids like him might have.

What would be the common problems?

Fragile X syndrome, Angelman and some other ones. We went through that. They said, “He doesn’t have any of these. Do you want us to do whole-exome sequencing and look at everything?” We were like, “Do we need to do another blood draw because that was brutal?” They were like, “No, we have his blood. It is super easy. It’ll take four weeks, but the costs might be high.” I was like, “What do you mean costs might be high?” He said, “It costs thousands of dollars. Let’s see if your insurance will cover it. Once your insurance covers your copay, the company will work on your copay.” We called our insurance and thank God, they said they would cover it. It turns out that they ended up paying $21,000 for this for us so God bless them. Most people don’t get this done. We got this done.

Let’s move to eight weeks after the initial testing was done. When we get a call from our geneticists saying, “Come on in. We found something, but we don’t know much about it. Your son has a truncation on IRF2BPL, which is one gene. Everyone has two copies of it. One gene of his is shortened where it shouldn’t be shortened. That’s the potential for what’s causing these problems. We’ve checked and it’s not inherited.” It wasn’t anything we could have prevented. It didn’t come from me. It didn’t come from my husband. They are completely random. They told us at that point that all they know is that kids with mutations like this have global developmental delays, which we already knew. They have hypotonia, which is something we already knew also, which means low muscle tone. They don’t use their muscles as well as other kids would or people with good muscle tone. The only thing we need to look out for is seizures because some kids show up with seizures with this. We were like, “It’s totally doable. We can handle this. We will continue our therapies and we’ll go from there.”

Two weeks after that, I got the worst call of my life. The geneticist called me, “Can you come in tomorrow morning?” I said, “Why do I need to come in?” He said, “We’ve got some more information. We need you to come in.” I was like, “There’s no waiting until tomorrow. Obviously, I’m coming but you can’t have me wait. What’s going on?” She told me that they found a child, who’s not even a child anymore. He is twenty years old and he is similar to Eli’s genetic results. He can’t talk. He can’t speak. He can’t communicate. He can’t even move his eyes to communicate. He can’t sit. He can’t eat. He can’t even hold his head up.

They showed me a picture. He’s this twenty-year-old kid that’s laying down. You don’t even know what’s going on in his head. I thought, “How can my kid, who’s fighting so hard to learn how to speak, to learn how to walk, to learn how to do all these things kids do, how can he possibly end up like that?” Talking, going back and forth, they were saying that it turns out that they think this is a neurodegenerative disease. We were like, “Eli’s doing good every day. This can’t happen to him.” They were like, “It doesn’t matter.”

He can be this smart, brilliant kid who can do all of these different things and have all these skills and one day, his genes will kick in and he won’t be able to do these. He will have what’s called loss of function and regression, where he loses skills one by one. For us, that was like, we shut down. We couldn’t believe it. How is that possible? We went for a week of being in complete shock and complete depression. I couldn’t function. My eldest son who’s the most independent, strong kid goes to school and he says, “I miss my mom. I want to go home.” For me, that was like, “You have a life. You have kids. You need to fight for it.” That was a turning point for me. That was like, “Get up, do what you got to do.” I got out of bed. I started taking care of my kids. I started taking care of myself. My husband is the same thing, poor thing. He had to go to work at the time he was doing all of this and we were dealing with this.

Our immediate thought was, “Let’s go from doctor to doctor. Let’s go to this neurologist. I’ve heard this neurologist is good.” I saw another neurologist who we went to UCLA. He’s like, “I’m sorry, I’ve never even heard of this. I can’t tell you anything more.” The visit was five minutes long. “Why don’t you go do an EEG for him, which is to see if he has seizures or not?” We were like, “Let’s go get an EEG.” We had an EEG done. Thankfully, he is negative for seizures. There are no seizures going on. We were one up, thank God. Once we got those results, it was still a matter of no one knows what to do and how to do anything. We’re like, “There are no researchers doing research on this.” There are no answers. It doesn’t even have a name.

We then decided, “There’s a doctor at Cedars who also does research in neurology. Maybe he’ll be able to give us some ideas and open some doors for us.” It took us weeks to schedule that appointment. Days of calling and I was like, “Please, fit me in.” He finally fits us in. The day before our meeting with him, he calls me himself and he goes, “I don’t know why you’re coming to see me.” I was like, “What are you talking about?” He goes, “I think it’s a waste of your copay and a waste of your time.” At that point, I was like, “He was our only hope, what are we going to do here?”

He didn’t mean it in a mean and malicious way that he didn’t want to help us. He was being honest. He didn’t want to waste our time. He didn’t want to give us hope for something that he didn’t know what to do about. I said, “Are you’re telling me that there’s nothing you can do?” He’s like, “There’s nothing.” I was like, “Are you telling me as a mom, I need to sit here and watch my beautiful child lose everything?” He’s like, “Unfortunately, yes.” I go, “If it was your child, would you sit back and say, ‘We don’t need to do anything?’” He’s like, “I know what you’re talking about. I get you.” I was like, “What about research?” He’s like, “There’s no research.” I go, “How can we start research?”

AIH 74 | Stand By Eli
Stand By Eli: People don’t want to give you hope about something they don’t know about or understand.

 

He said, “You’re going to need to raise $6 million before you can find a researcher to work on this. It’s so rare that no researcher is going to want to do this because there’s no money in it.” I was like, “How am I going to raise $6 million?” I got off the phone. I talked to my husband and I was like, “We are alone on this. If we don’t fight for Eli, no one’s going to fight for Eli.” From there, it became Google searches in which institutions do the most research in pediatric neurology. We are going back and forth and in all of this time, the only thing I had found on the internet was a family whose son has this disease. I looked at his picture and I was like, “He is so similar to Eli.” It became real to me that I didn’t have the courage to call them to talk to them. They had already known he has this. If anyone knew anything, they’d be the people for me to talk to. I couldn’t do it.

After a month or so of going back and forth, I said, “I’m going to reach out.” I reached out to them. They were excited. They immediately called us. We had this lengthy conversation. I didn’t realize how much of their lives were turned upside down until they told me about their day-to-day. Their son had been misdiagnosed many times and had gone through many treatments. It didn’t work. It had no effect on him. He’s in and out of the ER. They never know if what’s causing this. Is it part of his genetic mutation or is it something that they can treat? They had no answers. I was starting to look for possible researchers. I had remembered, at one point, Caleb is this the son of whose family I had spoken to. Caleb’s dad said that he had done a muscle biopsy and sent it to Baylor. For some reason, I remembered that.

What does that mean exactly?

A muscle biopsy is they go into your skin. They take a few centimeters of the deep amount of your muscle and your tissue. They study it. They grow it into fibroblasts, which is what it’s called. They study those fibroblasts to see the differences. They take the family’s muscle biopsies as well, so they can compare it and see the differences. We ended up doing it, me, my husband and both my sons ended up doing it as well, but this is way after the fact. I had remembered, he said he sent it to Baylor. I went back to them and I was like, “Where did you send your muscle cells?” He goes, “To Baylor.” I go, “Why’d you send it there?” He goes, “We’re part of the UDN, which is the Undiagnosed Diseases Network.” God bless them, they’re the only people who advocate for kids with undiagnosed diseases. The UDN sent them to Baylor.

I called Baylor University. I tried to get to figure out where the research team was. No one would answer me. I called again and reach someone and said, “Your geneticist needs to call. We don’t talk to patients.” I asked my geneticists. I give them the info. I said, “Can you call?” He never called. I called again, but there’s no answer. I emailed, but there’s no answer. I was like, “How am I going to get them to answer me back?” I sent an email that says, “I have some money set aside that I want to throw into research. Is there anything that you guys can do for us?” Two days later, email and a phone call, “The UDN is looking into this, but all they’re doing is trying to learn if this is causing these kids’ symptoms or not. Once they find that out, research is done.” How could research be done? They don’t care. They’re not looking into treatments and cures. What their mission is to find out is this gene causing these symptoms in these children?

Once they find that out, the research is done. Is there anyone else doing research on this? There’s a team in France who’s doing clinical studies. They are clinically looking at these kids and seeing what’s going on, which Eli happened to be patient thirteen on their study. Eli was only the thirteenth kid documented in the world with this genetic mutation. They’re looking at it clinically, but no one is doing further research on this. I was like, “We’re screwed. No one’s doing this.” My husband and I went back to talking back and forth. We hadn’t even gone public with Eli. No one knew what was going on with Eli and everything was a secret. We realized that we can’t keep this a secret. We need everyone’s help.

How old was he at that point?

He was two and four months. We were like, “We can’t keep this secret anymore. We need to start a foundation. We need to raise money. We need to get research going. If we don’t do it, no one’s going to do it.” That’s when we started Stand By Eli. We asked our community, who has been amazing and supportive to raise funds for us to do the research. We didn’t have to raise funds before the Baylor team agreed to do it. They already had a postdoc interested in IRF2BPL because apparently, it is highly implicated in autism, which means any changes in IRF2BPL, any information they get can open doorways into treatments and screening for autism. He was already on board. He was like, “I’m in.”

We got Paul Marcogliese on Dr. Bellen’s team at Baylor University. In the meantime, our pediatricians who had us talk to other families with kids with a rare disease. There was another family, the Gray family, whose daughters had the Batten’s disease. They were also in the same position. They needed to raise funds for research. They took it even a step further than regular research. They were doing gene therapy for their daughters. It immensely helped out their younger daughter and it helped out the older one as well as far as the progression of the disease. We were like, “We’ve got to get in on this.” The symptoms of Batten’s disease were very similar to what’s going on with Eli in IRF2BPL, except Batten’s disease is fatal at a very young age. We got in touch with them.

What does gene therapy look like?

Have you heard of CRISPR?

I have heard of CRISPR.

You have a life, you have a family. You need to fight for it. Click To Tweet

They will take a gene, correct it, send it in with a virus to attach to the genes in your body and it will correct the abnormality. It’s insane and the fact that they’re doing this, we’re lucky.

It’s incredible that someone came up with that. Were like, “We’re going to stealth mission this thing back into the sequence.”

We’ve gotten in touch with their gene therapist who had been successful. We were like, “Who better than someone who’s had success in neurodegenerative disease?” This is the person we’re going to go to. I emailed her on a Friday, asking to speak to her. She immediately got back to me. She’s like, “Can we talk on Sunday morning?” I was like, “Are you working Sunday?” She goes, “No, I’m not working. I want to talk to you.” I was like, “This is unreal.” Immediately, she was on board. I didn’t have to pay for her. She knew how big this was. She knew that finding a cure for Eli and other kids like him. Neurodegenerative diseases as a whole, they think they react in similar ways because, at some point, the neurons are being affected. They’re either being turned off or they’re being killed. They all have some similarities. The thought is that if you find something that works for one neurodegenerative disease, it could potentially help other neurodegenerative diseases. We’re talking about Alzheimer’s disease and Parkinson’s and all of it.

It became then not just helping Eli and the kids with IRF2BPL, it became, “We can affect autism. We can do all these amazing things for everyone else. Let’s open those doorways.” That’s what our research teams saw. They weren’t looking at the dollars. They were looking at, “We can make such a huge difference in the world and the difference in science once we do this.” Immediately, both teams on board started. The Baylor team got us in with the UDN, the Undiagnosed Diseases Network. They took over our case. They did muscle biopsies for all of us and sent it in. We told both teams that, “If we’re going to fund you, you guys are going to collaborate. There is no, ‘My research is mine. Your research is yours.’” They were like, “We have no problem collaborating. Let’s not waste time. Let’s not waste funds doing the exact same studies over and over again. We’ll share information.”

Does that happen often?

It never happens.

They don’t talk. It’s like the Chinese wall. It’s like a huge barrier between both schools because they want fame. They want to be known and they want to hold the trophy but the trophy is getting your son healed and successfully.

It is part of working in a university system. In a big scheme of things, the university hires them, pays them for the notoriety. I get where it’s coming from, but it’s not always to the benefit of the patient.

It sounds like they are not thinking about the patient necessarily all the time.

It is usually about the dollars.

Sam, regarding the dollars, what do you guys spend a year on therapy? I know he’s in speech therapy. You’re trying every modality to do what you can for your kid. Obviously, you guys have insurance.

Our insurance is always based on which plan is going to cover Eli’s current therapies because we have to get him these therapies. In 2018, we spent over $40,000 in medical bills and that’s a huge dollar amount. What people don’t understand when we’re doing fundraising for Stand By Eli, for example, is I can pay for it and I am paying. We’ve paid for the first year of studies out of our own savings because we want to save our kid.

AIH 74 | Stand By Eli
Stand By Eli: No one else is going to fight for your family but you.

 

Sam, what’s the nonprofit for? Is it for therapy too or just for research?

The nonprofit is solely for research to find information out to help not only Eli. Our foundation is called By Eli because the disease doesn’t have a name. There was no way to name it. It’s to help all these kids who have this mutation and who are known to have this mutation. The money goes towards the research being done at Baylor University and they’re looking at the mechanism of how this works. Once they find that out, they are going to be geared towards finding something pharmacologically like a drug or something that will help. We didn’t want to put all our eggs in one basket. We found Kathrin C. Meyer at Nationwide Children’s Hospital, who had done the Batten’s disease gene therapy. She’s also getting funded through us as well. We’re funding two separate teams whose end goals are for a cure, but one is through pharmacological avenues in medicine and one is through gene therapy. The two of them are collaborating.

The initial budget that we had thought has increased because we don’t have time to waste. Eli is five years old. He doesn’t have symptoms of regression. He doesn’t have symptoms of lost some function, but this can happen at any point. Any day, he can wake up and this can hit. Unfortunately, once the symptoms and the regression happen and these skills are lost, they don’t know if gene therapy will reverse that and fix it or if it’ll stop it from getting any worse. We’re in a huge fight against time. There wasn’t a matter of, “We’ll do it regularly. Let’s keep our budget low.” We started hiring more post-doctorates. We started hiring more technicians because we needed to be able to ramp this up and get it done as quickly as possible.

Our second year’s budget has soared because we’ve hired two additional post-doctorates full-time. We have hired more technicians to work on this full-time. Amazingly, our research is going fast that already within two years of learning IRF2BPL and the team at Baylor studying this. They’re moving on to studying ten drugs in mouse models to see the effect it has to learn more from it. To go from zero, a few years ago to test these drugs is unbelievable. The other amazing part has been that it turns out there is a doctor in Japan, who’s studying this because they believe it’s linked to stomach cancers, who learned from our team who published the first paper on the mechanism of this disease. He’s agreed to collaborate. He’s sharing all of his information with our team.

There’s another team who has been studying IRF2BPL for infertility. They have a one up on this as well. In addition to that, the Undiagnosed Diseases Network has seen that there has been so much growth in what we’ve learned and the implications that it can have. They’ve added another site at the University of Alabama and they’re also doing studies on IRF2BPL. We launched this. We started paying a year-and-a-half ago for these teams. It is snowballing into this big project. We’re going to change the world one way or another.

That’s got to feel pretty incredible to watch what you’ve done as a mother, as a family, to bring people together and drive a community and support around in helping to find a solution to cure for Eli and for everyone who’s going through something similar.

It is unbelievable. We’re blessed. We’re lucky in how they say the stars aligned. I feel like from day one of us finding out what’s going on, the stars aligned to find researchers who aren’t in it for the money, who truly care about our kid and these other kids.

How did the parents who don’t accept their children yet? You’re being a spokesmodel for the moms and dads out there that are afraid of showing their children to the public.

I’ve gotten calls from many people saying, “I can’t believe you went public with this.” For us, it was a matter of, “I get it.” At first, we weren’t going public with Eli. When you go to these therapies, you sit in the waiting room, you’re waiting in there for an hour or half an hour. There’s nothing for you to do, but to talk to these other parents. You learn so much from talking to people about what you’re going through. Eli doesn’t have autism, but I learned so much from these parents whose kids had autism because of a lot of these overlaps. The main thing is to get these kids’ brains functioning in a more processed manner.

You learn about doctors and you learn about different therapies like, “Have you tried this? Did you try that? This worked for me. This didn’t work for me. My doctor recommended this. What did your doctor recommend?” At that point, you realize that being quiet and keeping it a secret is not worth it. If I keep it quiet for my kid, I don’t learn anything for him. There’s a limited amount of fighting I can do for him. I’m limited to what my therapists are giving me.

Outside the doctors and therapists, what are you doing for Eli? Anything that’s not regular that’s often norm like acupuncture and meditation?

Acupuncture, we haven’t gone into yet. Fortunately, the school he goes to is a school for atypical kids and typical kids. I couldn’t keep that a secret. My kid goes to an atypical school. It’s the most amazing place on Earth for him. I’m happy I sent him there. It’s not a secret. It’s amazing.

Communities can be amazing and supportive in helping you throughout the process. Click To Tweet

You told us that he’s like the little leader.

They would say, “Kids, watch Eli. Look what he’s doing.” This school has given him so much confidence. We originally started at a regular preschool. Eli wasn’t talking the way the other kids were. The other kids didn’t understand him. He wasn’t playing the way they were. This kid is a social butterfly. He will talk to and play with anyone. He really is a magnet, but he wasn’t a magnet for kids his age because they didn’t understand him. My happy kid was losing confidence and I was like, “We can’t have this.” That’s when I fought for my kid. My point here is for parents to fight for their kids. I fought for my kid to be able to go to Smart Start. I fought for him to be acknowledged, to be seen as important. My kid is important. There’s no hiding him. He is perfect the way he is. He just needs a little bit of help and I need to get him that help.

When I see these parents who come to these therapies and they sit there all quiet, I feel compelled and it’s not my place. I know I’m overstepping my boundaries and I started talking to them, “Do you have any questions? Are you doing this? Are you doing that?” I don’t know what’s going on with their kid, but I want to make sure that they’re doing everything they can for their children. These kids are endless possibilities of where they can go, but that is if they get the right treatment, if they get these therapies at a young age. If you keep yourself in denial and you say, “He’s going to be fine.” He might be fine, but he could do so much better if you help him out a little bit. It’s the stigma of my kid has to go to therapies. I felt it too. I didn’t tell people my kid had to go to therapies. He can’t do a play date because he has to go to therapy. At some point, you realize that you’re doing so much of a disservice to your kid by hiding things because you’re not learning.

You went to yourself because you’re closing and walling yourself off from all the possibility that comes with as you have proven in a year in being open and going for it.

Not only that, I used to hide myself from the other parents because I didn’t want to have to tell them what was going on with my kid. Once you become your true self and you accept what’s going on, then people accept you for who you are. If I’m ashamed of my kid, other people are going to think, “They’re shaming him.” I have no shame.

What’s interesting is most parents, it’s not the kid who they’re ashamed of. They’re looking in the mirror. I’m going to be direct because I have a lot of experience in neurological issues. People can’t accept themselves and they reflect it on their children.

They think it’s their fault.

It’s not their fault, it’s no one’s fault. It’s part of God’s message. It is part of what you’re doing and what your son is doing. You are standing for those who can’t stand for themselves.

It’s huge. Kids need people to fight for them. They can’t do it on their own. It takes a village. My brother-in-law started this thing that says, “It takes a village to raise a kid.” He took it even further and he says, “Now, it takes a village to save a kid.” Everybody needs to help save these other kids. Your kid doesn’t have it, but you’re lucky your kid doesn’t have it. Even if your kid does have something wrong, we all need to help each other out. I never realized how important philanthropy was until I’m sitting in it. You don’t realize how valuable, not only your money is, but your support is. Your validation, you’re raising awareness and accepting it and to be on the other side. People don’t see it. When you’re on the other side and you are the one asking for help, it’s the hardest thing in the world because you feel like you can’t help yourself. You feel helpless.

That feeling of helplessness is horrific. When you ask people to help you out and you see that it doesn’t register with them, you think you don’t register with them. You think you don’t matter, but it’s not the case. It’s because other people don’t know what it’s like to be on that side. I never knew what it was like to be on that side. Clicking a button and donating means so much more than people can possibly imagine. We’re fundraising for Eli, but because I realize all of this we’re donating to other causes because I get it. Everyone is important. All of these foundations who are helping out anyone, they’re important. We’ve learned a lot in a year about ourselves and the magic of children is what it all boils down to.

I’ve been on the website StandByEli.org. I’ve watched the videos you have on there with Eli. He looks like this little ball of love. He’s like all lit up and happy to be dancing, singing and playing. It’s fun to see him showing up like that. You shared with us a story of him that no matter what he’s going through, he’s thinking about how can I be there for my older brother or how can I be loving and connecting with my family. I think that’s beyond what I see happening with the community, seeing how much he’s showing up. How old is he?

He is five and he consoles the other kids in school. He gives them his toy when they’re crying. In the first week of school when he started at Smart Start, there was a therapist there who is an Orthodox Jewish. She started calling him Sadik. I was like, “What is that?” She goes, “It means the righteous one.” I go, “You knew this after one week?” She was like, “Are you kidding me? I’ve never seen anyone like Eli. He’s giving and he’s caring.” I was like, “I can’t believe you saw that in one week of knowing him. I see that I’m his parent.”

AIH 74 | Stand By Eli
Stand By Eli: You do a huge disservice to your kid by hiding things from them because they’re not learning.

 

He’s a gift to others. He is a lovebug.

He’s an amazing lovebug. When I see all the other kids, when I go pick him up at school, all these kids are sweet and they’re all waiting for their hugs. They want to be acknowledged. They want people to see them. They want people to show them love. You realize that all of these kids are pure and sweet. We need to do what we can help them out, help them be independent, make them strong and let them know that nothing’s wrong with them. They can do anything and everything. It may take them a little more time. They may need to practice a little bit harder, but they can do it. Once you give these kids that kind of empowerment, you unlock a whole new world for them.

It’s contagious because we just met but I’m like, “I’ve got a friend now for life,” based on your story because I can relate to this. It’s beautiful. You’ve got to do a TED Talk.

Time and time again, we had people come on here and share their stories. One of the common threads is community and how life-changing and empowering a community around whatever someone’s going through can be. I think it’s those little bits that we don’t always realize until we’re put in that situation of like, “This is what it feels like to have the support of the community. We forget that we can isolate ourselves. We can also isolate the people around us by not showing up,” like what you do with all the kids. It’s like, “How can I empower these kids, love them and support them and let them know that they mean something?”

Even beyond that, aside from the kids, my personal relationships, I was hiding something huge. People didn’t know for an entire year until we went public with Stand By Eli, what we were going through in our house. No one knew. If I blew someone off or I didn’t have time or I flaked and I didn’t call someone, no one knew why. For people to finally understand, “I now realize when someone does something negative to me, it might not be about me. They might be having a tough time with something.” When you think about it, everyone in some way or another is dealing with something difficult in their own households, whether it’s their family members, their friends or themselves. Everyone’s going through something. One huge thing I’ve learned is to give people the benefit of the doubt because it might not be about me. It might be that they’re having a tough time.

I’ve learned a lot through this whole experience and when I tell people that I feel blessed to be in this situation, I’m blessed. I have the opportunity to do something for my kid before this dark road comes along. I have the opportunity to show him that I will fight for him. Eli knows we will fight for them from beginning to end. That makes them feel important. The fact that we found many amazing people to support us, our best friends who have been life-changing for us, are the other parents with kids who have special needs because we get it. We’re there for each other. Many doors can open up for you when you allow to see you for you. When you ask people for help and you show them that you’re vulnerable, you can use some help. It’s amazing how many people will gravitate towards you and be there for you without any expectation of getting something in return. We are blessed. I’m grateful. I would not change Eli for anything in the world. He is so beyond perfect that every day with him is a blessing. I wouldn’t change anything in my entire life.

It is wonderful for you to share your own perspective on this. It’s nice to have you on here to be the voice for such a life-shifting perspective and bringing who you are as an individual, as a community out into the open. When we bring things out into the open, we find that there are a lot of people out there who are willing to help.

It’s been amazing and we’re lucky.

Miracles are following you. You’ve opened up that doorway.

You have no idea. I honestly feel and it sounds weird, I feel that God is putting things in places where it needs to be in place. Everything in life happens for a reason. It might be difficult and you might suffer because of it, but sometimes you’ve got to see the big picture in life. What we’re doing has the possibility of not only helping Eli, he can help many other people. For me, that’s a huge blessing. To think that you can help others is a great feeling.

I think we’ll end on that beautiful note, but I got one more question for you. Seany, do you have any more questions before I go?

I’m happy. I’m glad I’m on this train with you.

You can't keep you and your kid in denial. Click To Tweet

My last question for you and this is what we ask everyone because we believe it’s so valuable is, what’s your inspiration?

My inspiration comes from my brother who passed. When I was six, my two-year-old brother passed in an accident and that was my inspiration to always follow kids, to make them empowered, make them feel important and make them visible. I think that’s what led me to be such a warrior for Eli and these other kids are the suffering I experienced then made me a survivor. It’s made me a warrior and that’s my inspiration.

Let people know where they can find you and Eli and how they can donate to the cause.

Please visit StandByEli.org. You can follow us on Facebook at Stand By Eli. You can follow us on Instagram, @Stand.By.Eli. We’d love to have you follow our journey. We share everything, we’re open. If you have questions and you need help just call me and I will help you.

If you’re out there reading this and you think someone you love would get value from this message, send this episode to them. Let them know Sam’s beautiful story and message and that’s how we grow this thing is by sharing and creating that community.

Thank you so very much for having me on.

You are welcome. Thank you, Sam.

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