The Saratoga Sun -

Bravery defined

Child, family deal with health issues courageously, benefit planned May 20

 


Few parents put their children to bed and have to hope when they wake up, both children are still alive. This is the scene endured every night when Sharon and Jerome Bustos put their two-year-old daughter Alison to bed.

“I go to bed knowing I have two daughters and I just pray in the morning, I still have two,” said Sharon.

Alison doesn’t have just one ailment to contend with.

An extremely rare condition, known as Infantil Scimitar Syndrome has Alison breathing with one and a quarter lung. That would be enough for a baby to contend with, but because she does not have a second full lung, her heart has shifted to the center of her chest instead of being in the normal position in the chest cavity. Her heart also has a hole in it.

As bad as that is, there were two holes a year ago. It is hoped this hole will repair itself, but if not, heart surgery is in the near future.

She has been diagnosed with pulmonary hypertension, sleep apnea, hypertension seizures and esophageal dysmotility, which means she cannot swallow much food without major discomfort.

Alison was delivered at 33 weeks. Sharon and Jerome were in a hospital to see Jerome’s father who had just gone into a sugar coma when problems with Sharon’s pregnancy started. While in the hospital in Rawlins, Sharon started to get contractions. She found herself being flown to Denver where Alison was born. Although there was about a day of doctors trying to keep her from having the baby.

There was a lot of drama for the Bustos family those next few days, because Jerome had to leave his comatose father and get down to Denver as fast as possible.

Early delivery is not a new occurrence for Sharon and Jerome. Their first daughter, Bailey, was born at 29 weeks, so both parents were somewhat prepared for how long their second daughter would be in a hospital. Bailey had some early problems associated with premature birth, but stabilized into a child who has grown up the past nine years relatively healthy.

The doctors first thought Alison was okay, but hours later she had trouble breathing and doctors knew something was wrong. The battery of tests Alison withstood is tough for most parents to imagine even before she was diagnosed with all her health problems.

It has been a tough time as the family has had to contend with one health issue after another for their daughter. This is why they are adamant about giving Alison every opportunity to enjoy her life by taking trips when they can. They are doing their best to give her as normal of childhood as her diseases will allow.

A vacation is a major logistical job of taking life saving machines and getting in contact with oxygen services along the way. There is no room for error when planning a trip, because a mistake could cause incalculable damage to Alison.

Last September, the two year old weighed 11 pounds and showed no growth for six months. A gastrostomy tube was inserted in her stomach and her weight increased to her current 16 pounds. It is just one more tube Alison must have to keep her alive.

Alison is behind in some development for her age although she is making progress. She started walking at 23 months and she is talking. Sharon says the team of doctors Alison have seen are excellent. The Memo rial Hospital of Carbon County has been outstanding in getting Alison life flighted to Denver for medical treatment. Alison has had to be transported four times by helicopter to Colorado.

One of the drugs needed to stabilize Alison is Viagra. Viagra was originally conceived as a heart medication but is no longer covered by insurance companies. This was the case when it was prescribed to Alison. The family could not leave the hospital until the prescription got filled. Sharon and Jerome were so frustrated at not being able to leave they tried to buy it themselves. While Jerome was trying to find a place to fill the order, Sharon got in touch with Sinclair Oil Refinery’s Human Resources. Who got on the phone to the insurance company to say the drug needed to be covered for Alison’s medical well being.

“The people in HR at Sinclair have been the best,” said Sharon.

Jerome agreed. “Sinclair takes care of us, but there are so many expenses that are not covered because they aren’t tangible, such as having to rent a special car to carry Alison’s equipment to travel any distance.”

When people hear about Alison’s situation, many express concern and sympathy, but most don’t comprehend all the machines and medicines needed to keep her alive.

First there is the oxygen producer that is connected to the concentrator which in turn has the long tubes that Alison must constantly wear. Even with tubes always attached, Alison moves around with ease because she is used to it. Her play radius limited to 21 feet from her machine.

“She even knows to put back the air tubes if somehow they come loose when she is playing,” said Sharon.

It is a way of life to make sure their daughter is constantly hooked up to machines says her parents.

Her nine-year-old sister Bailey knows that as soon as she comes home from school, she has to take a shower before she can come in contact with her sister, so it is straight to the bathroom once she is home.

If anyone in the family gets sick, it is total quarantine from Alison. The risk is just too great to take any chance.

There is a fundraiser for Alison from 5 to 7 p.m. May 20 at the Hanna Recreation Center. Dinner, raffles, craft booths and silent auctions are all a part of the fundraiser. The cost is $8 for adults, seniors $6 and children $4.

This valiant little girl and her supportive family face an uphill battle trying to have a life without more complications as she grows.

The smiles she gives easily to her parents indicate Alison is happy considering the adversity she faces routinely.

Buoyed by the great strength her family offers day to day, she continues to sparkle no matter what her health.

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