This year the “Oxford 5K Race for Life” expanded to include Ataxia-telangiectasia or A-T. Three members of the Oxford community have the progressive degenerative disease and hope to raise awareness and funds for research by teaming up with the 5K.

The race is scheduled for July 18, 2020 at 8 a.m. and will start at the Oxford City Park located at 8948 N Westside Hwy Oxford, ID. Registration is on race day from 7-7:30 am.

“Instead of a race fee, we invite you to donate to either cancer research, A-T research, or both,” said Jill Ward. Donation jars will be available at the race. She grew up in Fallon, Nev., and her husband, Larry, grew up in Malad.

“We are the parents of seven wonderful children--Dallin, Spencer, Enoch, Ben, Bekah, Rachel, and Nate,” said Jill. “We spent the first several years of our marriage in Utah County, 12 years in Malad, and found a property that we absolutely loved in Oxford and have been residents of Franklin County since 2016.” Their children Ben, Beckah, and Rachel have been diagnose with ataxia-telangiectasia.

“Ataxia-telangiectasia (A-T), pronounced Ay-TACK-see-uh Teh-Lan-jick-TAY-sha is a progressive, degenerative disease that affects a startling variety of body systems,” said Jill. “The first signs of the disease usually appear early in childhood, when children begin to walk. Though they usually start walking at a normal age, they wobble or sway when walking, standing still or sitting. In late pre-school and early school age, children with A-T develop difficulty moving the eyes in a natural manner from one place to the next, and they develop slurred or distorted speech, and swallowing problems.

“A-T is presently incurable and unrelenting. If they are lucky enough not to develop cancer, most A-T children are dependent on wheelchairs by the age of 10, not because their muscles are too weak, but because they cannot control them. Later, A-T patients usually die from respiratory failure or cancer (children with A-T are more susceptible to certain types of cancers) by their early or mid-20s. A few A-T patients live into their 40s, but they are extremely rare,” she said.

A-T respects no racial, economic, geographic or education barriers. Both males and females are equally affected. Epidemiologists estimate the frequency of A-T between 1 in 40,000 and 1 in 100,000 births. But it is believed that many children with A-T, particularly those who die at a young age, are never properly diagnosed. Therefore, this disease may actually be much more common.

In 2003 Larry and Jill had a good, comfortable life. “We were both just finishing up our bachelor’s degrees at BYU and we had three healthy, handsome boys. That same year we received the very unexpected and exciting news that we were expecting twins! I didn’t sleep much that night as I was in shock and spent the night re-watching the ultrasound video because I couldn’t believe it. I was especially excited to also learn that one of my babies was FINALLY going to be a girl!” she said.

The twins were born at 36 weeks and got off to a little bit of a rough start with feeding and breathing issues, but after nine days the Wards were finally able to bring them both home. “Even though it was exhausting and overwhelming at times, I loved having twins!!! The boys also loved the twins, sometimes a little too much,” she said.

“In 2006 our lives were once again completely turned upside down. When Ben was just 18 months old, he started staggering and would run into things. The first time it happened, I felt a very powerful and peaceful impression come over me that something was really wrong with him, but that everything was going to be ok. After fervently searching for answers for about a year, Ben was finally diagnosed with A-T. This news was very hard to process. Most days, I was fine, but sometimes I would cry, especially as my heart ached for his future. As he desired so much to become like his older brothers, I knew that there would come a day where he would have to change his expectations just as we would all have to do.”

“A few months later, I started to notice that Bekah was also starting to have a wobbly gait. I took her to the doctor and a short time later she was also diagnosed with A-T. My heart was shattered that both of my twins, and my only girl, had been diagnosed with this horrible disease. My way of coping with it for the first couple of years was to just ignore it and enjoy my time with them. Eventually, with some encouragement from family, I got in contact with the A-T Children’s Project and started to educate myself and connect with others who were on the same journey.” Through it, Jill said she has met “some of the most inspiring, loving, and determined people that I have ever met. Many of them have become like family to me as we have laughed together, cried together, and encouraged each other through our different challenges.”

With five children and the disabilities they were facing, the couple thought they were done having children. They were surprised with, Rachel, who was born in July of 2010. At about 18 months old, took her new baby to the pediatrician because she was not gaining weight, would tire quickly, “and I was noticing some unsteadiness in her balance. Of course, I was paranoid about her having A-T, but the doctor assured me that I didn’t need to get too worried until we had more conclusive evidence. He drew her blood to test her AFP levels (a marker for A-T).” The results were discouraging. “He told me that her AFP levels were reading higher than normal and that I should be preparing for the worst. Even though I started to panic, the feeling of peace that had come over me when Ben started showing symptoms returned and I was able to bear this news.”

Life has been anything but easy or normal for the family.

“When you are raising young children/infants you make it through that phase of the life cycle knowing that the struggles associated with that stage of life will end, but when you have special needs children the extra demands placed on you physically, financially, and emotionally often do not end. In fact, the challenges are often escalated. Not only do you have the normal struggles of life, but you are faced with spending hours making and attending doctor and therapy appointments to get your children the help that they need, dealing with insurance companies, trying to assist your children with all of their daily living special needs, and trying to educate yourself and others about their disease.

“There often remains little time or energy to take care of yourself. Relationships that you desire to cultivate get moved to the back burner because you are in survival mode, thus leading to isolation. When Rachel got her feeding tube they asked me to complete a survey. Some of the questions on the survey had to do with isolation. These questions made me really reflect on the reality of the struggle of isolation when you have special needs children.

“While other families move forward living the life cycle of a “normal” life, you are stuck in the first phase of the life cycle. It can become very challenging to find time for other people or find others that you can relate to and share in your struggles. The children with special needs have this same struggle. Somehow, we summon the strength to make it through the day and get up the next day and keep putting one foot in front of the other,” she said.

The Wards appreciate their support system.

“So many people have been SO good to our family and have reached out to us in great love and kindness on many occasions, and for that I am so grateful. We have also had very uncommon experiences that have forever changed our perspective and outlook on life. ...Every day we are inspired by their determined and happy spirits.”

Ben will be a Junior at West Side High School this year. He has an infectious smile and loves going to school to see his friends. He is a manager for the football team and is a member of the key club. He is currently connected with Troup 1776 in Malad and is working towards getting his Eagle.

“When Ben was about eight he still wasn’t riding a bike and would often ride in a stroller due to fatigue. Through good nutrition, lots of supplements, and prayer we finally got him to a point where he was able to ride a bike and completely went away from riding in a stroller. It was a miracle!”

His balance is not perfect, but even to this day, he is still able to ride and walk wherever he is determined to go. He and his sister, Bekah, both completed Trek with the youth a few years back, largely on their own. Ben is very independent and is always full of surprises.

“Earlier this year, when we still had normal church, we got to church and started filing in to sit on our usual row, but Ben didn’t stop at our row. He continued on to walk up to the stand and sat down. I continued to watch him as he pulled a folded piece of paper out of his pocket. Upon further investigation, I discovered that he was on the program to speak and he hadn’t told any of us. I later learned that he had called the bishop and ask to speak (speech is an area Ben struggles with because of A-T). He gave a very short, but touching talk about how “wickedness never was happiness” and then he bore his testimony of his belief in God. For years I have grieved so many losses because of his A-T diagnoses, but that day my grief was overshadowed by a much deeper window into my son’s soul as I saw him for the brave, spiritual giant that he is. Ben’s future goal is to go to BYU and study Family History like his brother, Dallin.”

Bekah is also going to be a junior at West Side High School. During the school year Bekah is up by 5:30 every morning doing yoga and getting ready for the day. Academics are very challenging for her, but she is extremely dedicated and has maintained mostly A’s, said her mother. Bekah loves watching sports of all kinds, especially with her dad and brothers. She has been a manager for the football team, is a manager for the wrestling team, “and is their biggest recruiter. “She also enjoys all things outdoors, especially camping.

Recently Bekah decided she was going to join the drill team because a friend had asked her to join with her.

“Given that she hadn’t danced since she was five, has always been shy getting up in front of people, and that she has ataxia, I’ll admit I was a little concerned. Her first performance I felt a lot of anxiety for her, but then I realized that all she had to do was smile her gorgeous smile and do her best and people loved it! It has been such a joy watching her dance this season and I am so proud of her. My heart is full that my baby girl with A-T is still dancing at 16!” Bekah is also known for her spunk and sense of humor.

“At one of our recent home churches she was giving a talk and started out by saying, “I’d like to start out by introducing myself for those of you that don’t know me...” said Jill. Bekah LOVES children and would like to go to school to become an elementary teacher.

Rachel, also known as “Minnie,” is another fun girl who brings joy to the Ward family, said Jill. She loves attending Harold B. Lee Elementary and spending time with her friends. Two of her favorite activities are dancing with Noelle’s Dance Studio and swimming at Downata Hot Springs. Her grandmother taught her play the piano and she is determined to play the ukulele, “even though some of the chords can be a challenge for her to play because of her ataxia,” said Jill. Bekah loves animals of all kinds and can often be found outside with her cats. She is very creative and has a great deal of determination.

“Last year she got tired of waiting for me to get out all of the Christmas decorations, so she enlisted her brother’s help to get the decorations upstairs and did an amazing job doing the decorating herself!” She wants to be an artist when she grows up. She has recently gotten a wheelchair, not because she can’t walk, but to give her support and reduces her fatigue levels. Her best friend is her brother Nate, the family’s second surprise baby.

The Wards hope that sharing their story will raise awareness about A-T as well as funds for the A-T Children’s Project.

“We pray every day for the healing of our children and that the scientists will continue to be inspired to find a cure for this disease. Not only will this research benefit those who have A-T, but also other prevalent diseases such as Alzheimer’s, Parkinson’s, A.I.D.S., and Cancer as the ATM gene responsible for causing A-T plays a part in all of these diseases,” said Jill.

“The latest A-T trial has been the EryDel Dexamethasone trial that was conducted at various sites throughout the US. Gene therapy has also recently been performed on an 18 month old A-T girl by Dr. Yu from Boston Children’s Hospital. We are all anxiously awaiting the results of the gene therapy,” she said.

The Wards will be participating in the 5K, where donations may be made. Donations may also be sent to the A-T Children’s Project in behalf of Ben, Bekah, and Rachel. To learn more about A-T, visit atcp.org.