Alexander the Great

Katie and Ryan Buck’s baby son Alex has a nickname. Alexander the Great is like many other 8-month-olds. He laughs and loves to play on the floor with mom.

In family videos and portraits he’s bright-eyed and happy. But there is one difference.

Alex was born with Trisomy 18, a genetic disorder with causes the infant to have a heart defect and obstructive apnea from neurological muscle weakness in his tongue making it difficult to eat.

According to the Mayo Clinic’s online data on Trisomy 18, also known as Edwards Syndrome, there are fewer than 20,000 cases in the United States and is usually fatal before birth or within the first year of life.

Symptoms include a low birth weight, small abnormally shaped head and birth defects in organs that are often life threatening. Edwards syndrome has no treatment and Alex was only given two weeks to live by hospital doctors.

But Alex is beating the current statistical mile-markers. He’s now 8 months old. Katie, formerly Katie Green, originally from Prairie City, said there is no roadblock in his immediate future that would keep him from hitting the one-year mark and beyond except the high price of medical care.

Alex’s medical needs cause financial strain on a family who is trying to do what’s right for their child. So in steps former PCM graduate Megan (Aalbers) Crees of Casey.

Her 3-year-old son Braydon Crees was born with several challenges including severe hydrocephalus and severe lobar holoprosencephaly which required brain surgery.

Cress understands the financial challenges associated with a special needs child. So she’s organized a benefit to help make things a little easier for the Buck family.

Ryan is a filmmaker and owns his own video production business, so the parents have to purchase Alex’s medical insurance plus their own. Their insurance bills are topping $1,300 per month.

For Katie and Ryan to afford the 10 hours per day, seven days per week in-home shift care Alex requires, the baby will need to be approved for Medicaid but his application for disability is in limbo. The only other way to enroll Alex in Medicaid is for Ryan’s business to make less money.

“One of the unfortunate things about insurance is you cannot get home shift nursing care with any kind of private insurance. It doesn’t matter how great your plan is. You have to be on Medicaid,” Katie said. “So what we’ve had to do so we don’t lose clients is send projects to other editors we work with, and they are getting paid more so we can only bring in a certain amount of money per month in order to get Alex the care that he needs,” Katie said.

The Benefit for Alex will be from 5 to 8 p.m. Sunday at the Family Life Center in Prairie City. A freewill donation for a meal with pasta, dessert, and beverages will go to support Alex’s medical bills. There will also be items for sale and a silent auction.

Alex’s disability is long term and will never be outgrown, so Katie said their costs could climb and his needs are immediate. They’re also trying to travel to Florida for six months so Alex can escape Iowa’s cold and flu season and get him near a top pediatric pulmonologist.

Katie and Ryan have always had to fight for their child. Because Trisomy 18 is considered by the medical community as a death sentence for 90 percent of those born with the disorder, doctors often don’t offer initial treatment. If it’s discovered prenatally, many doctors will recommend abortions.

One example Katie gives to highlight the lack of care is basic feeding. Many children with Trisomy 18 have neurological deficiencies which can cause difficulties in muscle control. Alex can not get all the nutrition needed from bottle or breast feeding because he could not fully control action in his tongue.

But the doctor specifically told the Bucks Alex did not need a feeding tube.

“Here Alex was, a four pound, five ounce baby, and he lacked the ability to fully feed himself because of his syndrome,” Katie said. “He was hungry. He would cry and fuss, but neurologically his tongue strength wasn’t where it needed to be. ... Without the tube he would have starved to death.”

In a film documenting Alex's birth, Ryan dubbed an audio conversation with the hospital doctor explaining the severity of Alex's situation to the new father. The doctor attempts to convince Ryan the newborn has maybe two weeks to live and encourages them to feed Alex without assistance.

“If you just want to bottle feed, then what he eats he eats, and what he doesn’t eat he doesn’t. There is very little limiting you from going home tomorrow,” the doctor said. “Bottle feed him, breast feed him that’s great. What every he doesn’t take that’s OK too.”

At 3 months old, Alex was fitted with a gastric feeding tube which is how he takes the majority of his food. But as he gets older and develops, Katie and Ryan said those issues are getting better and he’s learning to feed by mouth.

The doctor also said any heart, kidney or abdominal tumors Alex could have due to Trisomy 18 did not matter due to his life expectancy. The doctor told Ryan surgery would put Alex through unnecessary discomfort and would not increase his chances of survival.

“He did this with no testing on Alex’s internal systems. It was based on the Trisomy 18 diagnosis,” Katie said.

Alex’s heart irregularities are improving on their own, Katie said, and he will not need surgery.

But the parents feel the accepted survival rate statistics, taken without early and consistent treatment, are outdated. Katie and Ryan have found an entire community online of Trisomy 18 survivors who are living meaningful lives.

At the end of his short film, Ryan shows a montage of people living with the disorder and gives a glimpse of their stories. The people range in age from 4.5 to 44 years old. These online support groups and positive stories of children and adults with interests and adventures to tell give Ryan and Katie hope for Alex’s future.

“We’ve met adults and parents of adults with Trisomy 18. Some of them walk and talk, a very small number. A lot of them are nonverbal and in a wheelchair,” Katie said. “But there’s a huge spectrum.”

For more information on the Benefit Meal for Alex Buck visit the event's Facebook page or call Megan Crees at 641-740-7172. To keep up on Alex's progress also visit him on Facebook at Alexander the Great Trisomy 18.

Contact Mike Mendenhall at mmendenhall@myprairiecitynews.com