"We were told he would be a vegetable."
Logan Sykes has spent the past four years disproving this prediction.
On May 10, 2011, Cameron and Alex welcomed Logan, their third bundle of joy, into the world. Alex had a normal pregnancy, but she noticed this child hadn't been as active in the womb as the first two.
"I went to the hospital a couple times throughout my pregnancy since he wasn't moving as much, but they didn't think there was a problem," Alex recalls. "When he was born, his eyes were solid white."
Logan was immediately placed in the NICU to regulate his temperature and an eye specialist confirmed the newborn had glaucoma, or high eye pressure, and cataracts. Arrangements were made for him to be transferred for surgery.
"The next thing I know, we were on our way to San Antonio," Alex says. "He was two days old and I hadn't even got to hold him yet. He had surgery at three days old. We never got a chance to sit down and really know our child in those first few days because he was in doctors' arms."
The Sykes describe Logan's first year of life as the most difficult of theirs, and understandably so. By the time Logan was 18 months old, he had undergone more than 30 eye surgeries. The surgeries helped, but Alex knew something still wasn't quite right with her son.
"At six months he wasn't rolling over or trying to crawl," Alex says. "Our other two children had met their milestones, and even met some of them early, so we knew he wasn't your typical child. But, no one really knew what was going on. We ran tests and nobody could find what was wrong."
Finally, a genetic test confirmed Logan had Lowe's syndrome, an extremely rare condition that affects the brain, eyes and kidneys.
"Logan's diagnosis was very complicated," Dr. Wehner, Shannon Clinic pediatrician, says. "With syndromes, we don't really know what causes them, but there are an assortment of things a child might be born with that cause problems. What was initially apparent with Logan was his eyes. You can't even count on all your fingers and toes all the surgeries he's had so far. Since he was so little, no one knew how much pain his eyes were causing him."
Along with the glaucoma and cataracts, Logan also has renal fanconi syndrome. Instead of absorbing the nutrients and calcium they need to function properly, his kidneys flush the nutrients out of his system. This had led to rickets, or brittle bones. He had a gastronomy tube procedure to help deliver nutrients directly to his stomach and has also had several hernia surgeries.
All of these required multiple appointments and trips out of town.
"For a while, it seemed like Logan was having a couple surgeries a week," Alex says. "I practically lived out of town. We have a great support system in San Angelo, but we didn’t have anyone to keep our other two children long-term so they came along to all the appointments. Cameron was working out of town and he came along as much as he could. It was hard."
Last spring, Logan's family made the decision to have his left eye removed.
"They said when you have high eye pressure it feels like your eyeball is being pulled out," Alex says. "It was a hard decision, but the pressure in his eye was so severe. We prayed about it and put it in God's hands. It's been one of the best decisions we've made. We immediately saw a change in him and his attitude."
"He finally stood up that day," Cameron recalls. "It was just a testament to how much pain he was in."
And Logan hasn't let anything slow him down since. He takes physical, occupational and vision therapy.
"I'm the type of mom that signs him up for everything," Alex says. "If he fails, he fails, but we were told Logan would be a vegetable and wouldn’t be able to walk, talk or do anything. We bought a walker in October and he has taken off with it. It's amazing to watch him. He also uses a wheelchair and he maneuvers it really well. He's been doing everything we thought he'd never do and he blows us away on a daily basis. He's happy and thriving."
The Sykes family is constantly amazed by their youngest son and celebrates every challenge he conquers.
"There have been times when we've been stressed and at a loss for words," Alex says. "For a while I was mourning a healthy child. I was mourning a child who would never throw the football or chase his brother, and I didn't know what to do or how to help him. But, nothing in the world can compare to the feeling you get when you see your child do something you thought he'd never do."
Lowe's syndrome is a terminal illness, but the family's outlook remains positive.
"We know he is going to pass away early," they say. "We cried for several months after we realized this, but we know it’s in God's hands and there's nothing we can do to change that. We live our life day to day and try to be the best parents we can. We just enjoy every moment."
Logan continues to see specialists, including an endocrinologist. He takes five doses of medicine twice a day to help maintain his kidney function, which has decreased over the past year. His peripheral vision is still intact.
"His family is very impressive," Dr. Wehner says. "Initially, there were a lot of small steps to conquer and the diagnosis is overwhelming. For them to face it day in and day out, it's an arduous task. They are all fighters. His condition requires all of them to be strong. You just need to meet and talk to him to see what a miracle he is with everything he has endured and will continue to endure. He faces more on a daily basis than what most of us can imagine and he does it with a smile on his face."
The Sykes family is grateful for the care they have received from Dr. Wehner and Shannon.
"Parents might not realize how close it can hit home," Alex says. "Your child could become ill tomorrow. As a parent, I want others to know the resources Children's Miracle Network provides help when you need it most and help kids that need it most. All of our children are miracles."
Now, through a lot of prayer, determination and love from his family, Logan continues to disprove the prediction made at his birth.
"We just pray every day and we finally were at peace and realized things were falling into place and happening like they were supposed to," Alex says. "When you look at him and when he's born you're told he's going to lay there for the rest of his life. It's like being told you lost the game and then hitting it out of the park on the final run. He is our miracle because he has defeated the odds and is no. 1 when it comes to moving past the obstacles in his way."