“In 2009, I was raising my kids. I was doing weddings. I was teaching group fitness. I was doing all this stuff, then my voice kept going out.

“I was a fitness instructor for 17 years. So I had a lot of vocal cord abuse. I would lose my voice for weeks, then it would come back. After a lot of testing, they decided it was from reflux. My esophageal sphincter was wide open. So everything was coming up, and it was burning my vocal cords.

“One of the top surgeons in Texas performed the surgery, and I had some bad side effects. I wasn’t able to swallow hardly anything. Even my saliva, I would start choking. It was absolutely horrific.

“Over time, things got a little better. My voice would come back. I started teaching again. Things seemed to be good. Then, all of a sudden, it deteriorated again. I needed a second surgery.

“I was feeling so bad. I didn’t want to eat. I still have issues. Eating is not fun for me. I can’t swallow normally. I’ve not eaten solid food since 2011. I’m on a very soft diet. When I do eat, it takes me a couple hours. Because as soon as I start ingesting something, I start having esophageal spasms. I have the same issues with drinking anything.

“So during the course of the day, I’m not eating or drinking. And people are asking, ‘How are you able to do anything?’ I say, ‘It’s God’s strength in me. He’s called me to do this.’ Because physically, it makes no sense.

“A couple years ago, I was diagnosed with Lupus. I think that everything I’ve struggled with kind of falls under that. But had it not been for all those struggles, this place would not be here. My illnesses kind of put me back into the Lord’s will for my life. I know without a doubt, this is what he created me to do.

“He’s surrounded me with an unbelievable army of family, friends, staff and volunteers to make this what it is today. Even though it’s hard — sometimes with my health, I’m really down for the count — this ministry is a dream come true.”

— Nikki Rincon

Nikki is executive director of Hearts and Hands of Baytown, a ministry of Iglesia Cristo Viene church.

Related:

• Food ministry ‘delivering hope’

The post Chronic health struggles can’t stop her appeared first on The Baytown Project.

“One thing I’ve learned is to never feel like everything is OK. It was March this year when the majority of extra nurses — travelers like me — were sent back home. We all thought COVID was finally settling down or somewhat over. It took just two months, and suddenly we had this big spike with the delta variant.

“This whole experience has definitely been traumatizing. I don’t ever feel like we’re safe.

“I’ve been an ICU nurse for seven years now. In the first five years of my career, I didn’t see so many people die cumulatively as I have these past two years. I’ve seen so much death.

“As nurses, we often compare our level of PTSD to soldiers on the battlefield. Although it’s a different style of fighting, we’re all striving to preserve human life. And to see so many people fall in front of you … I can’t imagine anyone going through this and not coming away scathed in some kind of way.

“Talking to other nurses, we’re all we’ve got when it comes to actually understanding what this feels like. Thankfully, the hospitals offer counseling. They give us prayers a lot of times before our shift starts. But it still feels like you’re walking into doom.

“I went through a period when after a long stretch of days off, I would have anxiety about going back. I would literally be shaking before the shift, because I never knew what was going to happen. I feel like I’ve always been someone who’s resilient when it comes to emotional stress. But this has been something totally different.

“COVID has let us know exactly how mortal we are. To see that every day, it has changed me as a person.”

— Kelvin Gray

Related:

• ICU nurse stresses importance of vaccine

The post ‘COVID has let us know exactly how mortal we are’ appeared first on The Baytown Project.

“I used to be a national sales manager for dehumidification. We dried out large commercial buildings in the U.S. and all over the world. I had to resign because of medical issues: muscular dystrophy.

“It’s a genetic family thing. We have a particular type of it. It hit my grandfather, my mother, my uncles and my brother. I knew my whole life that it was coming. It just came on to me faster than everybody else.

“It started about five years ago with shudders and shakes. I can’t walk well. I have equilibrium issues. I’m in constant pain, in my legs, my feet, and occasionally my arms. Medication helps with the pain. But there’s no stopping it. It’s a progressive disease. Most of my relatives who’ve had it ended up in wheelchairs.

“I have good days and bad days. The other week, I was down for five days. I wasn’t able to get out of bed. I couldn’t walk. My equilibrium was off. I was getting violently ill, which is one of the symptoms. And I never know when it’s coming. It just happens.

“I used to be an avid boater. I can’t do that anymore because I can’t maneuver. I haven’t boated in over two years.

“I was never angry about it. I guess frustrated might be a better word. Once I got an understanding of it — this is what I can do, this is what I can’t do — then I came to accept it.

“There’s nothing you can do about it. If you get cancer, you can go get treatment. But there is no treatment for this. As medicine progresses, maybe there will be a cure one day. I’m 54. I don’t think it’s going to happen in my lifetime.”

— Mike McPhilliamy

The post He’s come to terms with muscular dystrophy appeared first on The Baytown Project.

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“Everything I see and hear makes me think of Weston. It’s hard to pick out a specific memory since they are all important to me.

“My husband, Chris, and Weston loved hunting together. They built a gaming PC together. Then Weston picked out parts and bought them to help his friend, Cody, build one as a surprise. Weston loved Christmas. Each year now, we’ve been giving gifts to other young men with EB, teens and 20s we know from Facebook. I feel sorry for them because I know what their life is like, and we want to help make them smile.

“After our house flooded in 2017 because of Hurricane Harvey, we had to live in an apartment for over a year until our house was fixed. We got Weston a kitten, Ricky Bobby, in June 2018. It gave him something to smile about while he was stuck in his wheelchair in that tiny place.

“Even though it was a challenging situation for the three of us there, I’m thankful that I got to spend so much time with him. I wasn’t working the last few years of his life, so I got to take care of him. It was the best job I ever had. Weston was the best boss.

“I would love to go back and live in that little apartment with him like we did after the flood. If I could have him back, I’d live there forever.”

— Dana Zucha

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• Rare skin disorder never-ending battle

• ‘It was sad each time a finger became useless’

• ‘Missing him is such a sad thing’

The post Taking care of son ‘best job I ever had’ appeared first on The Baytown Project.

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“Weston got sick all of a sudden. It happened so fast that we feel like we didn’t really get to say goodbye like if he would have been ill for a while.

“He had a good checkup on a Friday, and he passed away the next Wednesday with flu, pneumonia and sepsis. He was 24. I guess that just shows how fragile the skin disorder had made his body.

“Weston was very sweet, and he had a great sense of humor. Missing him is such a sad thing. Looking at pictures now and thinking he only had a week to live after this or that photo, and we didn’t know, is just the hardest thing.”

— Dana Zucha

Related:

• Rare skin disorder never-ending battle

• ‘It was sad each time a finger became useless’

• Taking care of son ‘best job I ever had’

The post ‘Missing him is such a sad thing’ appeared first on The Baytown Project.

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“I knew that some kids with EB would die young, so I was always concerned. But I never wanted Weston to miss anything, worrying that it would be his last school party, last band concert, last time bowling.

“Some kids with EB went to camp, but I secretly was scared to send Weston. I’d always offer that he could go if he wanted, and make new friends. But he would say that he already had friends. And he did.

“A big challenge for him, and for us to watch, was how he gradually through the years lost the ability to do some things. Like after the cancer surgery on his foot in 2016, he had to be in a wheelchair. He never walked again. He didn’t get to drive any more or continue college. Then his fingers started curving and scarring to where he couldn’t play his Xbox. My husband, Chris, had to modify Weston’s mouse so that he could play games on his PC, and he needed a foot pedal to help do things on the keyboard. It was sad for him each time a finger became useless.

“Weston was in a lot of pain, and we really couldn’t do a thing about it.”

— Dana Zucha

Related:

• Rare skin disorder never-ending battle

• ‘Missing him is such a sad thing’

• Taking care of son ‘best job I ever had’

The post ‘It was sad each time a finger became useless’ appeared first on The Baytown Project.

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“Weston was born with recessive dystrophic epidermolysis bullosa. It’s a rare hereditary skin disorder that’s incurable. His skin was very thin and fragile, and it would blister easily. Things that wouldn’t even scratch us could tear his skin.

“He wore bandages daily to protect his wounds and try to prevent new ones. We had to unwrap him, bathe him, and then rewrap him like a burn patient. It was very painful. We did it every day until the eighth grade, when we started taking Friday nights off. Then, after he got much older, we did it every other night. But even when we didn’t do a full bath and change, there were things to change daily. His arms and legs were always wrapped. His back and shoulders, and sometimes his chest, would have wounds, too.

“Trying to get him to heal was like fighting a never-ending battle. But we just did what we had to do. Sometimes that meant six-hour bandage and bath sessions. Instead of family dinners around the table, we had family bandage changes where we would spend hours talking, laughing, crying, watching TV.

“His type of EB affected his whole body, inside and out. He had surgeries to widen his esophagus because sometimes it got to where he couldn’t even swallow his own saliva.

“Now I feel like I don’t even know how we did all that and continued to work. And I don’t know how Weston was able to go through all that, continue going to school and graduate. But he did. He was very strong willed, and he kept a positive attitude. But he dreaded those bandage changes.”

— Dana Zucha

Related:

• ‘It was sad each time a finger became useless’

• ‘Missing him is such a sad thing’

• Taking care of son ‘best job I ever had’

The post Rare skin disorder never-ending battle appeared first on The Baytown Project.

Before our coronavirus staycation began in earnest, me and the Mrs. escaped for a quick trip east of our Baytown home to check out a few of our favorite things. In one day we hit up Sea Rim State Park in Sabine Pass, Village Creek State Park in Lumberton, and Big Thicket National Preserve in Kountze. As you might have guessed, we were pretty tired by nightfall. But all that hiking was worth it. Not only to help celebrate her birthday, but to enjoy lots of fresh air, nature and peacefulness in the midst of this weird moment in time.

At Sea Rim, we had the beach all to ourselves. At Village Creek, it was just us and the trees. By the time we made it to the Big Thicket, we were worn out, so we didn’t stay long. But the next morning, with a little more pep in our step, we stopped by Beaumont Botanical Gardens to view the beautiful scenery.

All in all, it was a nice getaway before returning home to hunker down for who knows how long.

What have you been up to during the coronavirus pandemic? What activities are helping to take your mind off the situation — for a little while, at least? If you care to share, use the message feature on The Baytown Project’s Facebook or Instagram page to submit a photo and a few thoughts. Or you can email baytownproject@gmail.com. I’d love to share your story with others.

— David Berkowitz

The post Brief escape from the coronavirus appeared first on The Baytown Project.

“It’s been 16 months since I was diagnosed with GBS (Guillain-Barré syndrome). Little by little, I’m regaining everything. I still have nerve pain in my neck, my face and legs. They told me that I will probably always have some nerve pain, even when I’m completely recovered. I don’t have a lot of strength right now. I can’t open a bottle of water with my hands, so I use my mouth. My legs are coming back, but they’re not as strong as they once were.

“When I regain full strength, I’ll be able to get up from this wheelchair on my own. Right now, I need Mom’s support. She helps me out with so many things, from getting dressed to taking a shower. I see progress. Like once a week, as I do therapy here in the apartment, I can tell that something is coming back and I’m getting stronger. I’m just going to keep on working hard because I don’t want to be sitting in this wheelchair another year. I don’t want to have to depend on anyone else. I have never been like that. I’ve worked ever since I was young, and paid my own way. So I’m hoping in six months that I’m back to normal. I just have to keep pushing.

“While my situation has been very hard on me and my family, during this process I’ve seen people who have it much worse. I met a guy in the hospital with no legs and no arms. But he was still there, not giving up. When you see somebody like that, it’s very inspiring. I’m like, if he’s not giving up, why should I?”

— Jaime Aceves

Related:

• ‘I knew something was seriously wrong’

• ‘I felt like I was having to say goodbye’

• Dad overcomes to dance with his girls

The post He’s working hard to leave that wheelchair appeared first on The Baytown Project.

“Two years ago, I took my daughters to the Daddy and Me Dance. I rented this big Mercedes limousine. I went all out for my girls, and they had a blast. I couldn’t do it last year because I was in a hospital bed. I was sad about it because I knew how much they loved going. But they understood. So this year I told my mom, ‘I’m going to do my best to get on my feet and take them to that dance.’ I was very determined. I would get on my exercise bike and pedal 15 to 25 miles at a time. I mean, I put in some hard work to get back on my feet. 

“The weekend before the dance, I asked my sister to take me outside. I wanted to see how much I could walk. Using my walker, I was able to go from the apartment all the way to the dumpster and back. Then they took me to Roseland Park, and I walked half of the full lap there. I did not give up. I was working very hard to stand, so I could surprise my daughters. 

“On the day of the dance I told them, ‘Y’all help me stand up,’ and I walked into that dance hall. They were surprised. I did not want to sit. I had the walker in front of me and moved around with them. Then our song came on, ‘Dancing With Cinderella.’ It’s a very pretty song that I picked for my oldest daughter’s quinceañera. She loved it. So when that song came on, I told her, ‘Come here. Let’s dance.’ She was like, ‘But Dad, you can’t stand.’ I said, ‘Let’s dance.’ I put the walker to the side, grabbed ahold of her, and we were dancing. She started crying and was like, ‘I can’t believe it, Dad. You’re actually dancing.’ It was very emotional. We danced, and then another song came on, and I danced with my younger daughters. It was hard, and I was scared that I would fall and make a scene. But it all worked out. We had a great time. 

“I worked very hard for that moment. With everything that me and my family have gone through for more than a year, it meant the world to me and to them.”

— Jaime Aceves

Jaime continues recovering from Guillain-Barré syndrome, a rare neurological disorder in which the body’s immune system attacks part of the peripheral nervous system. After regaining the use of his legs and arms, he is gradually building up strength and mobility.

Related:

• ‘I knew something was seriously wrong’

• ‘I felt like I was having to say goodbye’

• He’s working hard to leave that wheelchair

The post Dad overcomes to dance with his girls appeared first on The Baytown Project.