Family,friends fuel will to live

A little less than 16 years ago Laura Stafford was faced with grave news that would change her life forever.

When her baby boy Derek became ill at 4-months-old and was placed in ICU with what doctors considered “a case of pneumonia,” she had no idea that this was only the beginning of many health struggles her son would face.

He was released from ICU a couple days later. Stafford said she knew something was still wrong however and every time she left Derek at daycare he would cry to no end.

The mother took her son to see a different doctor and Derek was readmitted to ICU. There Stafford heard two possible diagnoses, kidney disease or cystic fibrosis – both of which Stafford said she had no clue about.

Doctors gave Derek a cystic fibrosis sweat test and the results came back positive. He was diagnosed with the disease at 6-months-old.

“Before they even explained to me what it was my family and his father’s family was down there at the hospital,” said Stafford.

Stafford said that when she finally asked the doctors what cystic fibrosis (CF) actually was the response she was given was a parent’s worst nightmare.

“The nurse said, ‘If your son lives to 18 it will be a miracle,’” said the mother. “That was a tough one to swallow.

“We were also told by that same nurse that CF could have a false positive, and that it could still be a kidney disease so we decided to have him released from that hospital in Hutchinson, Kan. and to drive to Denver, Colo. to find out what was wrong with our baby,” she said.

“We got there and the doctor ran no tests and did nothing, but looked me straight in the eye and said, ‘There is never a false positive. Your baby has cystic fibrosis,’” said Stafford.

According to information put out by the U.S. National Library of Medicine, “Cystic Fibrosis is caused by a defective gene which causes the body to produce abnormally thick and sticky fluid, called mucus. This mucus builds up in the breathing passages of the lungs and in the pancreas, the organ that helps to break down and absorb food.”

CF is passed down through families and is one of the most common life-threatening chronic lung diseases in children and young adults, according to library information.

Stafford said that Derek was immediately put on basic medications for weight gain because he couldn’t digest fats and that he is required to take pancreatic enzymes from a pig every time he eats in order to keep food down.

“The doctor told us he would see us in a month. So we went back a month later and the doctor said he didn’t think he was going to see us again because he was that sick,” said Stafford. “At that young of an age he said it was sink or swim and either he would fight or not. Turns out he’s a fighter.”

Derek Hill is now a 16-year-old sophomore at Sidney High School who enjoys football and basketball.

“He’s been extremely healthy and they said he is one of the healthiest patients they have ever seen and still see,” said Stafford. “But just in the last three years it’s been a battle.”

“The older you get the more progressive the disease gets. It used to be that kids born with it lived to be between 3 and 6, then it was 18-years-old, and now the life span is up to 32,” she said.

“His meds in a day are unbelievable. It’s hard to comprehend when people see them out on the table,” the mother explained.

Stafford said that all mucus-producing organs are affected by the disease, as well as the respiratory system.

“It also affects their respiratory system, which is initially what they die of – they die of lung failure,” she said.“Initially they need a double lung transplant to live is what it comes down to.”

“It also hits the digestive tracks and then the endocrine system, and they usually end up diabetic because their pancreas becomes so scarred over and that’s why they take the pig enzymes,” said Stafford. “It also affects their liver. A lot of them go into liver failure and need a liver transplant.”

The mother said the disease also affects the body’s reproductive system.

Spending time in a hospital is nothing new to Derek, who spent much time going in and out of the setting growing up.

“We are down there (Denver-Children’s Hospital) every three months minimum,” said his mother. “This last couple of years he has spent more time in the hospital than he has actually spent in school.”

When Derek is admitted it is always for a minimum of two weeks, said his mother, and the doctors call his visits “a tune-up.”

“When we breathe in particles we can breathe them out. Everything he breathes in sticks to his lungs and sinus passages and he can’t breathe them back out,” explained Stafford of some of the complications of the disease.

“To describe his breathing they always say it’s like a little kid drowning. They also describe it as taking a straw and plugging your nose and running up a hill with the straw and that’s the only way you can breathe.”

“It’s the mucus that causes it and they suction it out,” she said.

Derek also suffers from a blood disorder that causes blood clots.

The teenager has had three sinus surgeries just in the last two years and his “tune-ups” include heavy IVs with potent antibiotics, oral steroids and sputum cultures.

Through Derek’s health struggles he has always been surrounded by family and friends, especially his 13-yr-old brother Peyton.

“Everyone says Peyton is 13 but looks like he is 18,” said Stafford. “He’s mature beyond his age. He’s that amazing all-American kid – just like his brother.”

“They are both smart and very athletic, but Peyton will tell anyone that he doesn’t just play for himself, he plays for his brother too,” she said.

But Derek not only has his family’s support in his medical endeavors, he also has the support of the Sidney community.

He is “a man of few words,” as he puts it, but his few words explain how grateful he is for the community supporting his fight against the disease.

“It’s really amazing,” said Stafford of the outpour of encouragement.“It’s hard not to love Derek and he’s been here long enough that the community knows him, but it’s hard for them to look at him and see his story. They know he is in the hospital and on the football team. I think that is probably what is hard for the community to see is that if you look at him he doesn’t look sick unless he coughs. Usually they are really malnourished and thin and he’s not. He’s pretty well built.”

A group of local adults in the community haverecently teamed up in efforts to raise money for not only cystic fibrosis awareness, but also for the family’s medical and gas costs.

The group combined efforts with Sidney High School cheerleaders back in February to hold a Purple Out Night at high school basketball games one Friday night. T-shirts were sold, and the proceeds amounting to $676 went to the Boomer Esiason Foundation that fights against cystic fibrosis.

The group is also planning another fundraiser, this time for Derek and his family, this upcoming Tuesday, March 26 from 5 p.m. to 7:30 p.m. It will be a dinner fundraiser held in the Sidney High School cafeteria.

“This fundraiser is kind of an extension of what we did for the Purple Out Night through the high school,” said Casey Cortney, owner and physical therapist at Sidney Rehabilitation and Wellness Clinic and a member of the Sidney adult support group for Derek’s cause.

“With this fundraiser, the funds raised will specifically go to Derek and his family to help with medical related expenses, whether it is the medical or the travel,” she said. “He spends a lot of time off and on at Children’s Hospital in Denver and it can be from weeks to months at a time.”

Cortney said that it will be a sloppy-joe type dinner with free-will donations.

The group is looking for food donations as well.

“If anyone is interested in providing food donations for the event they can contact me by calling the Sidney Rehabilitation and Wellness Clinic at 254-4979 or calling 250-2625,” she said.

The community group is also looking for donations prior to the event for a silent auction, and Cortney said that there is a chance there will be a raffle as well if there are some bigger items donated.

“This is our second step in helping this family,” said Cortney. “Our committee is also looking at possibly a dine-out for cystic fibrosis night in May, because May is Cystic Fibrosis Month.”

Stafford said that Derek, as well as the rest of their family, plans to attend the dinner as long as Derek’s health allows his presence.

Not only is the community showing their support for Derek, but also the 16-yr-old noted his school has his back too.

Before Derek was hospitalized this past fall he was playing on Sidney’s football team when he took a shot to the ribs during a play.

“They told us to take him to the hospital and see what was going on,” said Stafford. “Well, he had double pneumonia. It was just crazy for me and scary. He now has three parts of his lungs that are collapsed and he will never get that back.”

Derek said that he knew he was sick but played anyway.

But what happened next was unexpected by the family.

“His brother went to that next high school football game which was that next weekend and he cried so hard, and he never cries,” said the mother. “The community and that football team were focused on playing for Derek and hearing my little boy cry on the phone I thought someone must have died. But it wasn’t that, it was that he was surrounded by so many people chanting his brother’s name who wasn’t even there.”

Some of his teammates even paid him a visit at the Denver hospital, and one teammate, senior Tanner Wintholz, wrote Derek a poem when he was admitted.

•••••

Wintholz wrote:

I wrote this poem for Derek, it was the team’s idea. We love him and wish every player played with as much heart as Derek.

Another pain filled day

All this for one more play

Lungs gasping for air, making

memories go grey

All this for one more play

Not telling anyone I was hurt

Just to rep that colorful shirt

Displaying nothing but heart, even

though I feel like I am falling apart. Just

to rep that colorful shirt

Stepping up, instead of sitting out

Knowing this could be my last play out.

The feeling I get when I send the O 3

and out.

My name is D-Hill and I fight for one

more shout.

The family is already looking forward to next year where both brothers will take to the field together.

“To see him on the football field is amazing, and so is knowing that next year is going to be the first time and probably the only time his brother and him will be on the same football field,” said Stafford.

Derek is a running back for the team and his brother Peyton will be a fullback.

“He’ll be opening holes for me,” said Derek, in full grin.

Derek is scheduling his hospital admittance early at the end of July so he can be ready to go by the time football season rolls around.

His plans are to become a history teacher and coach – just like his father.