Williams Makes Impact On and Off the Court
2/5/2024 10:38:00 AM | Men's Basketball
As 14-year-old Jonah Williams made his way down the stairs of section 113 to join the Wake Forest Men's Basketball team before a late-November non-conference game, he excitedly talked about perhaps getting his first starting assignment from Demon Deacon head coach Steve Forbes.
Jonah, who suffers from Epidermolysis Bullosa, and as part of Team Impact, signed a commitment to be part of the team the next two years. Team Impact, according to their website, "matches children facing serious illness and disability with college sports teams, creating a long-term, life-changing experience for everyone involved."
"Jonah was born with a really rare genetic condition called epidermolysis bullosa, and his type specifically is one in two million," said Jonah's mother Patrice Williams. "Basically, any friction causes his skin to blister and that can be as simple as when he was a baby with seams on his diapers. It could be a tag on a shirt. So, the least amount of friction will blister or rip his skin. We all have these proteins that basically are Velcro hook and loop kind of hold our skin down.
"And he does not produce enough collagen XVII, so that bond is broken. So, his skin kind of just lays on top of itself, so these layers can shear back and forth."
The condition impacts Jonah's ability to eat and grow, as much of the nutrients he obtains ends up being used by his body to fight the disease.
"Unfortunately, this can happen not just to his outer skin, but he can get corneal abrasions on his corneas, wounds on his tongue and lips and inner cheeks, it can make it hard to eat," Williams said. "He has a G-tube (Gastrostomy Tube), so he's fed. He can eat, but most of his nutrition comes through a G-tube. Sometimes his mouth hurts so bad he can't eat. And the other part of that is all of his calories go to healing and so growth is difficult for him."
Doctors, immediately after his birth, realized Jonah had a serious ailment, but it took a bit of time and research to come to the diagnosis, because of how rare Epidermolysis Bullosa is.
"He was born at Forsyth Hospital, and they immediately took him over to Brenner (Children's Hospital)," Williams said. "There was an older doctor there who'd been around longer, and he said, I'm 99 percent sure it's something called Epidermolysis Bullosa. But even within that, it's such a spectrum that it could have meant death within his first year of life. There are all different kinds, it's definitely a spectrum. They had to send away two different types of biopsies and it took weeks and weeks and weeks to actually narrow it down because they start by your genetics test with the most common and then get to the rarest, and well, he has the rarest.
"For most dermatologists it's a line in a textbook. It's not something that they have seen. It is so rare that most doctors have not seen it before."
Not knowing exactly how long they would have with Jonah; parents Patrice and Matt Williams were running on adrenaline for most of his first two years.
"We really thought we might just have a year," Patrice said. "And so that year I took a million pictures and tried to soak up every moment. Then after he turned two it was like, okay, he's going to make it. So now we adjust to that. What does it look like? I can't keep up this pace. But yeah, we've had tons of support, families and friends who have helped us, and I used to have a rotation of about 10 people who would come in and alternate weeks, helping me with dressing changes and stuff like that, which was awesome."
Friends and family have helped a lot in the Williams' house, and Jonah has nursing care in school.
"He has a nurse who goes to school with him, which in high school was like a mom, but they stay in the break room, the teacher conference room, and he just checks in with them," Williams said. "When he needs something, he just goes to them. So that way it's not somebody just following him around all the time. But yeah, we've had lots of help and lots of support and God has been with us, and it's been very obvious. I totally believe in the power of prayer and that they have fortified us. It's one thing to have a child with special needs, but then also to not just survive it, but to thrive. And that's what we hope for both our boys is that they'll thrive in life."
Prior to having Jonah, the Williams had a son (Gabriel) stillborn at 37 weeks.
"Now we know after Jonah was born and he got the diagnosis, looking back, we think probably our first son had EB as well, and they should know, but they didn't know to look for it," Patrice said. "It's just been a harrowing journey. We adopted our third son (Gideon) through foster care, so we got him when he was two days old, which is awesome. My journey to and through motherhood has been a little bit unconventional."
Jonah keeps an unbelievably positive attitude despite the struggles and pain he experiences — confident, pleasant, uplifting, resilient and compassionate for others.
"There are some parts of his personality that he probably would not have if it weren't for EB," Patrice said. "He sees when people are in pain, and he cares about that because he knows what that feels like. He's just a special kid and he's light in a dark room. I think he's lucky to have Wake Forest and I think Wake Forest is lucky to have him.
"Home is his safe place where he lets his guard down and if he's in pain, he tells us he's in pain. And like any 14-year-old, he finds his little brother annoying and we will fuss and fight. But no, overall, for what he goes through and how he has to suffer, I mean overall he is, he's so positive."
As a freshman at West Forsyth, Jonah noticed the entire high school basketball team hanging out together at a football game, so he approached them with fist-bumps down the entire row.
"He's so confident," Patrice said. "I would not have had the confidence to do that in high school. And here he is, the kid who's probably getting the stares and the weird looks and stuff just being like, it is what it is and I'm going to make the best of it. So, it's pretty incredible."
Being a rare disease, there's little research that's been done on Epidermolysis Bullosa, and the treatments for Jonah consist largely of treating his open wounds and buttressing his system with vitamins and supplements.
"Because he has open wounds, he's losing a lot of that good stuff," Williams said. "So, things like iron and zinc, things like that. But then he's on some pain medicine, but nothing super strong. And the only treatment right now is wound care. A lot of the treatments that are coming out he doesn't qualify for, but hopefully he will when we get through the FDA process. Hopefully those will be options for him too. But yeah, right now it's just wound care and giving money and praying for a cure."
Late November Jonah and his family gathered at The Playground Golf and Sports Bar in Clemmons for the Steve Forbes Radio Show with Voice of the Deacons Stan Cotten. Jonah signed his commitment papers with the entire basketball team there to cheer him on.
"I mean it's been pretty awesome coming in," Jonah said. "I didn't really expect all that was going to happen, so getting to sign the paper and hang out with the players has been a really cool experience.
"It's been a lot of fun. When I first found out about it, it took me by surprise, but I didn't know what to expect. But it's been really cool to have and get this opportunity and I'm just excited to see what all's going to happen now."
The timing couldn't have been better for Jonah's development, according to his mother Patrice.
"Jonah is signing a two-year commitment, is committing to Wake Forest, and we'll be signed to the team, which means he'll be an honorary member of the team for the next two years, which is awesome," Williams said. "It's just come at such a great time as he enters high school. He went to a private school up through eighth grade, so it was very tiny and he was going to West Forsyth, which is this huge public school. The confidence needed to step into that new environment. I feel like this partnership has given him that and he's felt like, okay, this is who I am, and people can see beyond the boo-boos and the blisters and see me for who I really am. That is what these guys have done, and they've really made him feel at home. I feel like Jonah's just become part of that family already."
Jonah gets to spend plenty of time on the sidelines with the team and is around often during practice. One of the additional perks is that he'll have his own personal nutrition plan, just like the Demon Deacons.
"His wounds, all of that goes to healing, so there's not much leftover for growth," Williams said. "We try to get those extra calories in him through his tube, he couldn't possibly eat the calorie requirement it would take. Jonah will even have a nutrition plan just like these guys do. So, they've all got their nutrition plan and they take their certain vitamins, they have their certain goals for what they're trying to achieve physically.
"Jonah will have that also, he'll see the team nutritionist and say, hey, these are my goals, growth is hard for me, and that nutritionist will provide recommendations. You also have physical goals you need to achieve. Even if you don't like the taste of this shake or whatever it's necessary for you to reach those goals."
Wake Forest junior guard Kevin Dunn has built a strong relationship with Jonah already.
"Jonah's been awesome since last year when he started with us," Dunn said. "Absolutely amazing guy. It shows you a lot. You have a hard day of practice, but you remember. Yeah, Jonah right there. Positive, even high fives, stuff like that. He's always at every game with a huge smile on his face. Honestly, he's an amazing, amazing person. I'm so glad to have him in my life and I know all my teammates are as well. He is a really tough guy. Coach always talks about being gritty, grimy, tough and together — he is tough and together, so he's a great guy. He's got my phone number, texted me about class and stuff. I love him so much and I'm so glad he's with our team."
Living up to the Pro Humanitate spirit of Wake Forest, Andrew Carr realizes that his time on campus is about much more than just basketball, and he sees what an impact the team can make on Jonah as well as the impact Jonah can have on them.
"I think growing a relationship with him, realizing the impact that we can make is a whole lot bigger than basketball, and I think that's really important for us and the guys to realize that," Carr said. "But then also just the relationship that we've been able to build with him. Social media has been an awesome thing. I've been able to connect with him on Instagram and some back and forth text messages.
"We're all his friends and we're all going to be there for him. It's been pretty cool, and from the team aspect, that's our goal. You see him out there on game days and he's able to sit on the sidelines and really be a part of the team and break us down when we're in our warmup line."
Jonah comes to the games and to Wake Forest basketball practices with a huge smile on his face, and that positive attitude radiates through the building and has an infectious impact on all those around him.
"One of the reasons why I coach is to give back, and that's part of being grateful," Wake Forest head coach Steve Forbes said. "That whole grace thing, have gratitude and give back, and being able to impact his life and the way that not only I've been able to, but our entire team more. So those guys are unbelievable role models for him. And I've seen him grow as a young man over the past year and a half. And we'll continue to see him grow as he gets older. But anytime you can have positive role models in your life like these guys, I think it's nothing but a win-win.
"When you think you have it bad, you don't. There's always somebody that has it as bad as you do or worse, you know what I'm saying? But yeah, it opens up their hearts too, to be more servant-like and give back. And when they see the impact they can make on a young man and that he makes on them — it is a win-win situation."
Jonah, who suffers from Epidermolysis Bullosa, and as part of Team Impact, signed a commitment to be part of the team the next two years. Team Impact, according to their website, "matches children facing serious illness and disability with college sports teams, creating a long-term, life-changing experience for everyone involved."
"Jonah was born with a really rare genetic condition called epidermolysis bullosa, and his type specifically is one in two million," said Jonah's mother Patrice Williams. "Basically, any friction causes his skin to blister and that can be as simple as when he was a baby with seams on his diapers. It could be a tag on a shirt. So, the least amount of friction will blister or rip his skin. We all have these proteins that basically are Velcro hook and loop kind of hold our skin down.
"And he does not produce enough collagen XVII, so that bond is broken. So, his skin kind of just lays on top of itself, so these layers can shear back and forth."
The condition impacts Jonah's ability to eat and grow, as much of the nutrients he obtains ends up being used by his body to fight the disease.
"Unfortunately, this can happen not just to his outer skin, but he can get corneal abrasions on his corneas, wounds on his tongue and lips and inner cheeks, it can make it hard to eat," Williams said. "He has a G-tube (Gastrostomy Tube), so he's fed. He can eat, but most of his nutrition comes through a G-tube. Sometimes his mouth hurts so bad he can't eat. And the other part of that is all of his calories go to healing and so growth is difficult for him."
Doctors, immediately after his birth, realized Jonah had a serious ailment, but it took a bit of time and research to come to the diagnosis, because of how rare Epidermolysis Bullosa is.
"He was born at Forsyth Hospital, and they immediately took him over to Brenner (Children's Hospital)," Williams said. "There was an older doctor there who'd been around longer, and he said, I'm 99 percent sure it's something called Epidermolysis Bullosa. But even within that, it's such a spectrum that it could have meant death within his first year of life. There are all different kinds, it's definitely a spectrum. They had to send away two different types of biopsies and it took weeks and weeks and weeks to actually narrow it down because they start by your genetics test with the most common and then get to the rarest, and well, he has the rarest.
"For most dermatologists it's a line in a textbook. It's not something that they have seen. It is so rare that most doctors have not seen it before."
Not knowing exactly how long they would have with Jonah; parents Patrice and Matt Williams were running on adrenaline for most of his first two years.
"We really thought we might just have a year," Patrice said. "And so that year I took a million pictures and tried to soak up every moment. Then after he turned two it was like, okay, he's going to make it. So now we adjust to that. What does it look like? I can't keep up this pace. But yeah, we've had tons of support, families and friends who have helped us, and I used to have a rotation of about 10 people who would come in and alternate weeks, helping me with dressing changes and stuff like that, which was awesome."
Friends and family have helped a lot in the Williams' house, and Jonah has nursing care in school.
"He has a nurse who goes to school with him, which in high school was like a mom, but they stay in the break room, the teacher conference room, and he just checks in with them," Williams said. "When he needs something, he just goes to them. So that way it's not somebody just following him around all the time. But yeah, we've had lots of help and lots of support and God has been with us, and it's been very obvious. I totally believe in the power of prayer and that they have fortified us. It's one thing to have a child with special needs, but then also to not just survive it, but to thrive. And that's what we hope for both our boys is that they'll thrive in life."
Prior to having Jonah, the Williams had a son (Gabriel) stillborn at 37 weeks.
"Now we know after Jonah was born and he got the diagnosis, looking back, we think probably our first son had EB as well, and they should know, but they didn't know to look for it," Patrice said. "It's just been a harrowing journey. We adopted our third son (Gideon) through foster care, so we got him when he was two days old, which is awesome. My journey to and through motherhood has been a little bit unconventional."
Jonah keeps an unbelievably positive attitude despite the struggles and pain he experiences — confident, pleasant, uplifting, resilient and compassionate for others.
"There are some parts of his personality that he probably would not have if it weren't for EB," Patrice said. "He sees when people are in pain, and he cares about that because he knows what that feels like. He's just a special kid and he's light in a dark room. I think he's lucky to have Wake Forest and I think Wake Forest is lucky to have him.
"Home is his safe place where he lets his guard down and if he's in pain, he tells us he's in pain. And like any 14-year-old, he finds his little brother annoying and we will fuss and fight. But no, overall, for what he goes through and how he has to suffer, I mean overall he is, he's so positive."
As a freshman at West Forsyth, Jonah noticed the entire high school basketball team hanging out together at a football game, so he approached them with fist-bumps down the entire row.
"He's so confident," Patrice said. "I would not have had the confidence to do that in high school. And here he is, the kid who's probably getting the stares and the weird looks and stuff just being like, it is what it is and I'm going to make the best of it. So, it's pretty incredible."
Being a rare disease, there's little research that's been done on Epidermolysis Bullosa, and the treatments for Jonah consist largely of treating his open wounds and buttressing his system with vitamins and supplements.
"Because he has open wounds, he's losing a lot of that good stuff," Williams said. "So, things like iron and zinc, things like that. But then he's on some pain medicine, but nothing super strong. And the only treatment right now is wound care. A lot of the treatments that are coming out he doesn't qualify for, but hopefully he will when we get through the FDA process. Hopefully those will be options for him too. But yeah, right now it's just wound care and giving money and praying for a cure."
Late November Jonah and his family gathered at The Playground Golf and Sports Bar in Clemmons for the Steve Forbes Radio Show with Voice of the Deacons Stan Cotten. Jonah signed his commitment papers with the entire basketball team there to cheer him on.
"I mean it's been pretty awesome coming in," Jonah said. "I didn't really expect all that was going to happen, so getting to sign the paper and hang out with the players has been a really cool experience.
"It's been a lot of fun. When I first found out about it, it took me by surprise, but I didn't know what to expect. But it's been really cool to have and get this opportunity and I'm just excited to see what all's going to happen now."
The timing couldn't have been better for Jonah's development, according to his mother Patrice.
"Jonah is signing a two-year commitment, is committing to Wake Forest, and we'll be signed to the team, which means he'll be an honorary member of the team for the next two years, which is awesome," Williams said. "It's just come at such a great time as he enters high school. He went to a private school up through eighth grade, so it was very tiny and he was going to West Forsyth, which is this huge public school. The confidence needed to step into that new environment. I feel like this partnership has given him that and he's felt like, okay, this is who I am, and people can see beyond the boo-boos and the blisters and see me for who I really am. That is what these guys have done, and they've really made him feel at home. I feel like Jonah's just become part of that family already."
Jonah gets to spend plenty of time on the sidelines with the team and is around often during practice. One of the additional perks is that he'll have his own personal nutrition plan, just like the Demon Deacons.
"His wounds, all of that goes to healing, so there's not much leftover for growth," Williams said. "We try to get those extra calories in him through his tube, he couldn't possibly eat the calorie requirement it would take. Jonah will even have a nutrition plan just like these guys do. So, they've all got their nutrition plan and they take their certain vitamins, they have their certain goals for what they're trying to achieve physically.
"Jonah will have that also, he'll see the team nutritionist and say, hey, these are my goals, growth is hard for me, and that nutritionist will provide recommendations. You also have physical goals you need to achieve. Even if you don't like the taste of this shake or whatever it's necessary for you to reach those goals."
Wake Forest junior guard Kevin Dunn has built a strong relationship with Jonah already.
"Jonah's been awesome since last year when he started with us," Dunn said. "Absolutely amazing guy. It shows you a lot. You have a hard day of practice, but you remember. Yeah, Jonah right there. Positive, even high fives, stuff like that. He's always at every game with a huge smile on his face. Honestly, he's an amazing, amazing person. I'm so glad to have him in my life and I know all my teammates are as well. He is a really tough guy. Coach always talks about being gritty, grimy, tough and together — he is tough and together, so he's a great guy. He's got my phone number, texted me about class and stuff. I love him so much and I'm so glad he's with our team."
Living up to the Pro Humanitate spirit of Wake Forest, Andrew Carr realizes that his time on campus is about much more than just basketball, and he sees what an impact the team can make on Jonah as well as the impact Jonah can have on them.
"I think growing a relationship with him, realizing the impact that we can make is a whole lot bigger than basketball, and I think that's really important for us and the guys to realize that," Carr said. "But then also just the relationship that we've been able to build with him. Social media has been an awesome thing. I've been able to connect with him on Instagram and some back and forth text messages.
"We're all his friends and we're all going to be there for him. It's been pretty cool, and from the team aspect, that's our goal. You see him out there on game days and he's able to sit on the sidelines and really be a part of the team and break us down when we're in our warmup line."
Jonah comes to the games and to Wake Forest basketball practices with a huge smile on his face, and that positive attitude radiates through the building and has an infectious impact on all those around him.
"One of the reasons why I coach is to give back, and that's part of being grateful," Wake Forest head coach Steve Forbes said. "That whole grace thing, have gratitude and give back, and being able to impact his life and the way that not only I've been able to, but our entire team more. So those guys are unbelievable role models for him. And I've seen him grow as a young man over the past year and a half. And we'll continue to see him grow as he gets older. But anytime you can have positive role models in your life like these guys, I think it's nothing but a win-win.
"When you think you have it bad, you don't. There's always somebody that has it as bad as you do or worse, you know what I'm saying? But yeah, it opens up their hearts too, to be more servant-like and give back. And when they see the impact they can make on a young man and that he makes on them — it is a win-win situation."