|Paper||Hill Air Force Base Newspapers|
|Rights||No Copyright - United States (NoC-US)|
|Publisher||Digitized by J. Willard Marriott Library, University of Utah|
|Paper||Hill Air Force Base Newspapers|
15 Hilltop September 2, 1999 4 ,7 f j "'a S f 3 S ' 7 Tin " - ,; III 1 LfMlSDirDllQDi Air Force assistance gives boy a fighting chance Photos by Mary Galbraith Tazmun Heeks stretches out on the rubber mat which has his name spelled in it of his therapy room. In addition to toys and equipment to help stimulate Tazmun, the room is equipped with a light that flashes a variety of colors. Although Tazmun is cortically blind he is able to see some light. does not have the facilities and resources needed to treat Tazmun's condition. On base, the Family Advocacy Office and Family Support Center help personnel make contact with community resources, ensure military families are stationed in an area where services are accessible and by Mary Galbraith Hilltop Times staff W9S At Tazmun Heeks and both a challenge to his paris a miracle ents SrA. Jason and Sonia Heeks. Tazmun was born with a Tracheal-EsophageFistula, which means there is liiiiiiiSiiiiliiiiii . -- . I. S3 If. al .if mmm help families cope. Family Advocacy helped the Heeks receive extra finances to pay an experienced baby sitter once a week so they can get a break and go to dinner or a movie. Jenny McFarland, Family Advocacy nurse, and Brent Innes, Family Advocacy officer, also helped Jason with his appeal for a humanitarian reassignment after he spent three months in Korea.The Family Advo- ; mm an opening between the trachea (windpipe) and the esophagus; a Patent Ductus Arteriosis of the heart and a two chambered heart. Tazmun is fed using a in his stomach the Heeks call his "button." He is also cortically blind and has hearing Piiiii - 4 iiiiiiiiii G-tu- be loss. His brain damage impairs motor functions. Sonia said they knew Tazmun had disabilities soon afterbirth. He was born with a bad heart but did not have brain damage at birth. "They repaired his esophagus at about him to 22 hours-ol- d and they Primary Children's Medical Center," said Sonia. "They said he wasn't going to live life-flight- iiiiiiiBiiiiii mmmmmmmmmmmimmmm mmmmmmmmmmm axwx.:- - v i cacy members did not think he should ft have been stationed away from his son but McFarland said Jason felt it was his duty as an airman and thought he would let the Air Force down by requesting deferment. After three months the medical bills, therapy and constant care ofTazmun were too overwhelming for Sonia to handle alone arid reassignment was granted. .."A singie parent can't manage the bills and the baby. You can not be a single parent and do this job because Tazmun is like a full-tim-e job. That's why I don't work," said Sonia. ' McFarland said the Heeks are persistent shares a laugh with, from left, his uncle Nathan Evan who recently moved to the area to help with Tazmun's care, and his parents, Sonia and Jason Heeks. Tazmun ed through the night because they'd never seen such a bad heart. He's a miracle. It ended up he's lived a lot of months. Grew even though he wasn't ever supposed to grow Played. Learned to sit up, waved bye-by- e and learned to eat a little bit and drink from a cup. He could see normally and hear normally at 11 months old then he had the first of four cardiac and respiratory arrests. Jason and I did CPR on him and his heartbeat came back but he didn't breathe for quite a while. That led to severe brain damage from lack of blood flow and oxygen to the brain. "At that time they decided he was pretty sick and he wasn't a candidate for a heart transplant because he also has a problem with his lungs called pulmonary hypertension. Then they decided he'd be a 5050 ; 1 heart transplant risk so they put him on the transplant list at Primary Children's Medical Center; He waited on the list for seven months arid he was dying. Jason and I were both in the Air Force at the time and this is another huge benefit that we can thank the Air Force for they sent us TDY." The couple used the Internet to research hospitals with heart transplant centers, locating information on the best waiting times and how many kids were waiting according to blood type. They discovered Pittsburgh Children's Hospital had no one Tazmun's age and blood type waiting. "Pittsburgh said their kids wait around two weeks. We told the Air Force, We want to try and take our baby in and save his life. He's dying at Primary and there's been no calls for hearts.' So the Air Force worked with us," good as they are ; said Sonia. The couple was granted leave and three days after they made the decision to go, The Heeks live in one of 16 base homes equipped for individuals with disabilities with doorways and halls that allow a wheel chair to easily access all areas. Several other special accommodations cater to the needs of a person with physical disabilities. While the Air Force has provided the couple with several benefits, Jason said he doesn't want to give the impression that their expenses are 100 percent covered. TRICARE flew the family to Pittsburgh in a medical Lear jet. Both said the plane ride was emotional on several levels. "He got there and his organs started shutting down His heart was barely beating and we thought he was going to die. The plane ride there was pretty traumatic. He was bleeding in his stomach," she said. Tazmun's will to survive was stronger than his heart, and after 13 days in Pitts- burgh he underwent transplant surgery. When he woke up from the surgery the Heeks noticed he wasn't the same. He wouldn't take his pacifier, his arms were folded up and his body was stiff. When he was pinched there was no response and his eyes were vacantwith the whites showing. He'd become a vegetable and physP cians weren't positive about recovery. ;y "He didn't respond to anything at first and the neurologist in Pittsburgh told us that's what he'd be like the rest of his life but thafs not true at all," said Sonia. "Slowly but surely, with a lot of therapy and stimulation, he was waking up. He can see a little bit of light now. He can hear out of one ear normally and he moves and responds. Tazmun smiles, he laughs, he coos and he knows the meanings of a few words. He concentrates. He knows the meaning of "We have supplemental insurance through Medicaid... So anything the Air Force does- , abilities. and committed to each other and their child, which has greatly contributed to Tazmun's survival and improvement, "The parents have to be real persistent and when they hit a wall they just have to try to find an avenue to get around it because n't cover Medicaid picks up the rest. It was a really tough, hard battle to get all that stuff, :l You have to go and dig it out ' and fight for it because they're not going to give it to you," said Jason, who is assigned to the 649th Munitions Squadron. "The there's always a way...Sonia probably applied 20 times before she was accepted, to get on to Medicaid and people always said no," said McFarland. Family Advocacy pairs families with local support groups and people who've experienced similar circumstances. They often refer families to the' Heeks because of their knowledge of benefits currently available. The office said that may be the best resource for families with questions1 because information changes n a daily basis. For more infprrriationcoitabt Fam-- 1 H ily Advocacy at Ext Liesel Woodard at the Family-SupporCenter is another resource for base per--" sonnel who have a family member with a disability or are disabled. Woodard can tap resources, and while support groups or services may not be right in the neighborhood, the community has a wide range first place I would tell people to go is their doctor. Ask if there're other kid's fam- : ilies that have a related problem. Those people would have been there, done that ,, experience." The couple said Utah is an awesome state for families who have a member with disabilities and when Tazmun is three, he'll attend the Utah.School for the Deaf and Blind in Ogden. Jason hopes the therapist who does physical and occupational therapy with Tazmun during the week continues to spend individual time with Tazmun while he's in school. "I think special needs kids need special benefits and school is a special benefit he needs right now," said Jason. "This is a critical time in his life. Up to age five or six is the time when he can make improvement and I think all the help he can get to that point is needed." , mom." Tazmun also knows what "I love you" means. When his parents say the phrase his face crinkles for a few seconds as he concentrates to understand it's meaning, then relaxes as an ear to ear smile appears. Tazmun is now learning to hold objects and the Heeks practice putting tastes in his mouth and using a squirt bottle. He's also learning to move his tongue around. The couple said there's no cure for brain damage but stimulation, especially early in life while the human brain may be forming new pathways, may affect Tazmun's ' : , in-dep- th : ; - j ; easily accessible. She also has "tons" of reference books containing information on disabilities, conditions and services. In While the couple has found exceptional medical care in Utah, they know mil-itary life will eventually move them to another base. The Heeks pointed out that because of their son's condition the Air Force will never move them to an area that ' addition, a complete list of Utah non-prof-it organizations is available at her office. For more information, contact Woodard at Ext.