Lakeia Nard fights for answers to her son's rare disease.
Lakeia Nard: As the CEO and Founder of Melanin Children Matter, I'm dedicated to children's well-being. Raised in Wisconsin, I faced challenges as a single mother of five, instilling values of perseverance and empathy in my children. My youngest's rare disease diagnosis fueled my passion for advocating for children's health. Through Melanin Children Matter, I provide support and education for families facing similar challenges, emphasizing health equity and social justice. My advocacy extends beyond my organization, shedding light on the unique obstacles melanin children face. My journey from adversity to advocacy illustrates the power of compassion and determination, leaving a lasting legacy of hope and change.
TRANSCRIPT
So, here I am pregnant with my fifth child after four miscarriages. He was kicking strong. I was excited. And the day he was born, it was a wonderful moment. I knew he was going to be something special then.
We get home. He spent a week with jaundice. So while I'm on bedrest, he's back and forth in the hospital dealing with jaundice. Then it took him like forever to open his eyes, at least two weeks to get his eyes to open.
He seemed like a normal kid. He started to develop normally. He had some neck range that I was concerned about and so I talked to my pediatrician and he referred me to therapy.
Again, he was still thriving and I was just assuming like, okay, it's just joint stiff neck. He was born I'm an older woman at the time that I had him. And as he continued to grow, I'm starting now to notice delays, so we continue to take him to therapy.
He finally walked at about 15 months, but he walked with a gait. So I was like, “Okay, well maybe he's learning to walk.” It's kind of different and so I expressed that to, again, his pediatrician.
At first, he kind of just blew it off. He just sent me to get him diagnosed because he was diagnosed with developmental delay and then autism. And he kind of made an assumption, like maybe it was because he was autistic.
I was like, “I don't think autistic kids fall but okay.”
We continue with the therapy and, not even a year after walking, he starts to fall quite often. And he would get up using his knees as if he was an old man.
So I go back to the pediatrician and I say, “Okay, something is extremely wrong. He is falling often and when he gets up, he gets up like it's painful, like he's an older man.”
So we were referred to a neurologist in Louisville, which is two hours from where we live, and at a muscular dystrophy clinic. As she continued to work with him, she assumed right off the bat, “Well, it's got to be muscular dystrophy. It's got to be.”
So we did the whole go over what muscular dystrophy is. I get home, I do some more digging. I go to the support groups, ask more questions and it just didn't line up.
So, I call her back. I'm like, “We need to make an appointment, because I don't think this is right. This is not muscular dystrophy. This is not sounding right.”
So she lets us come back in for another appointment. She does more testing and she's like, “Well, he does have some fasciculation movements in his tongue and I'm seeing this all the time in my SMA patients, you know, the way that he's moving and he's falling and he's losing mobility. If it's a duck, it's a duck. If it quacks like a duck, it's a duck.”
And I'm like, “Okay.”
Again, I go home and now I'm in the SMA support group. I'm researching that and I come back to her. I'm like, “I don't think this is it either.” I was like, “It's not aligning with my son and how he acts and how he maneuvers.”
So she continued to do the research. She sent his case overseas. I'm just devastated. Like, how do I tell my other kids who just adore him, because he's the baby? He's extremely spoiled. Like, how do I tell them that he's going through this? Like, he could possibly be in a wheelchair.”
It was happening so fast. To watch my son learn all of these milestones that every mother is just so excited for their baby to learn, watching my son lose all of those same mobilities.
So we get back. It's not SMA, it's not muscular dystrophy. We're doing the muscle biopsies. At one point, we had to do a sweat test to make sure he didn't have cystic fibrosis, because he always got sick and he always got a fever and I never knew why.
So, we're doing all of these testings. She sends his case overseas and there is nothing. So she's telling me, “Well, we can't do any testing until he gets hospitalized again.”
And so I'm stuck just like I want to know but I don't want to wish that my son is hospitalized again. But as he continued to grow, he had a pattern of being hospitalized around the same time so I knew he was going to be hospitalized eventually.
And when he was, we did a whole genome sequencing and the NIH reached out to say that they had a hit on a gene mutation which was SPTLC2, and only one other person has ever been seen with that.
So we flew to the NIH. They do their testing and they say he has a form of pediatric ALS and enjoy him and you need to be thinking about if you would want him on machines or not.
We fly home with nothing. No resources, no new hospital to go to, nothing. I was just stuck. I couldn't believe it. Like he's going to die? We went from all of these other diseases where he could potentially live a full life to he's just going to die and enjoy him.
So, I did that. I enjoyed him. I let him be the kid that he wanted to be. Even if it was me going down the slide holding him, I made sure of him. So he went from walking to running me over with his wheelchair and thinking it was funny. I knew in the back of my mind, but I didn't want him to feel that energy from me, so it was going to be okay.
Reaching out to family and friends, the alienation was severe. It was like everybody just kind of just disappeared. Here I am having to pick this child up and move him all around the house because he is autistic, so he has needs that he wants to do. And if you're familiar with any child with autism, they're very demanding. So I am actively moving nonstop because I am his legs, I am his arms. And I'm watching him slowly regress to where he can't pick up to feed himself anymore, to where he can barely move around in his power chair.
We got through COVID and I was excited. I was like, “Yeah, we're going to make it!” In my mind, I was like, “Okay. Maybe when he gets around ten, I'll be more focused to say what's to come. I can think about it then. But right now, he's great. He's doing fine. He could live like this.”
We got through COVID. He didn't get sick and I was like, “Yeah, we're going to be okay.” And we wasn't. He eventually ended up getting sick again with rhinovirus and it completely shut his lungs down. We spent four months in the hospital. They tried three times with incubation. It didn't work so we had to do the trach and we went through that whole surgery.
Eventually, I was able to bring him home on a Do Not Resuscitate and on palliative care. He was doing better. He was picking up weight. He was getting in the motion of being back at home, which I kind of brought his whole room to the hospital. Because I was like, “As long as he's going to be here, he's going to be stiff. He's going to lose what mobility we have.” So I'm bringing video games, I even brought his wheelchair. Like, since we're here, this is going to be your bedroom.
So when we got home, he was he was ready to continue his day to day thing that he does at home. I eventually, by way of force, through court, he had to go see his father. We all did the training. And he passed away with his dad the day before he was supposed to come home to me. I would go over there every day, all day. I still went over there to do his medication. And every time before I leave, I'm like, “You ready to go home,” because I secretly wanted him to come home, so bad. And every time I'm leaving, I'm like, “You want to come home?” And he didn't. He was fine. He enjoyed his dad. They had a great connection.
The day before I was supposed to pick him up, he passed away. He called 911 and they resuscitated him, even though he had a DNR. He became brain damaged. I remember leaving the nail shop doing 90 to his house. And when I got to his house, the ambulance was pulling out and I was on the ambulance’s tail.
When they got him in the room, he looked at me and he smiled and went into full-blown seizures. And my baby was brain dead.
So, I bring him back home, because I wanted him to pass around family and not in the hospital. He made it past his 7th birthday on the machines. Eventually, it was time to take him off, because now he was having seizures again. So, I was told that it was time to take him off the machines.
It's crazy, because when I took him off, he lived a day and a half without the machines. And he passed away on Rare Disease Day at 7:14 PM, which both are my favorite numbers.
The nurse called and I had him sent for his autopsy to donate his samples to the NIH so that I could focus on finding a cure or a treatment for it. I felt like I couldn't save my son, so I'm going to save someone's son.
That's when Melanin Children Matter was born. I do this for King Nazir, my forever baby who is now my forever angel. That is how I will continue to keep his legacy alive.