Live Oak community rallies around family of survivors

Live Oak community rallies around family of survivors

BATON ROUGE, LA (WAFB) - A student at Live Oak High School cheered her final game Friday surrounded by family and friends dressed in blue. The student, Kayla Ordes, was diagnosed with Ataxia-Telangiectasia during childhood. Due to the condition, Kayla faces significant challenges with her motor skills, relying on a motorized wheelchair to get around. However, Kayla hasn’t allowed her disability to stop her from achieving her dream of cheering with the high school squad.

Her mother, Lisa Ordes, who also faced significant challenges due to a breast cancer diagnosis during Kayla’s early adolescence, credits the support and push for inclusion at Live Oak as a key reason Kayla was able to achieve her goals. She says the support and sense of normalcy has created an opportunity for Kayla accomplish her dreams and that she hopes Kayla’s journey will inspire other young children with disabilities to reach for their dreams.

In an editorial provided to WAFB, Lisa Ordes says:

"Kayla was born in May of 2003 after an uneventful, completely normal pregnancy. Donald, Isabella & I were so excited to have another little girl to share our lives with. Little did we know how our lives would change 7 years later. Kayla hit every milestone on time. She was always hard to hold though. She wasn’t able to hold on when you carried her as other babies did. At 14 mos old after a family vacation we took Kayla to see her pediatrician. He couldn’t pin point what was wrong so he sent us to a neurologist. This was the beginning of our journey. Over the next 6 years we saw many different specialists and had several tests run with no diagnosis. In the winter of 2009 Kayla had her yearly sleep study and some leg twitching was noticed. Our pulmonologist decided to have blood work done because he thought she might have a vitamin deficiency. Not the case. When her blood work came back off twice he referred us to an immunologist. This doctor ordered several more blood test. We then on April 16, 2010 received the diagnosis of A-T. We were devastated. I have only ever seen my husband cry a few times, this was one of those. We were in shock when we were told our beautiful child may only live until her late teens to early twenties and that there is no cure for Ataxia-Telangiectasia. We gathered our families and told them the news.

Dr. McCormick our Immunologist had seen 3 other cases of Ataxia-Telangiectasia. We immediately trusted him. He got us in contact with John Hopkins Hospital in Baltimore. John Hopkins Hospital has a clinical team that specializes in Ataxia-Telangiectasia. We flew out for our first visit in September of 2010. We received confirmation of Kayla’s A-T diagnosis on that trip. I had hoped and prayed that we would be told the tests were wrong even though my gut knew they weren’t.

Kayla has been pretty healthy for the most part. When she was a toddler we had bouts with ear infections that resulted in a set of tubes at age 3. Once we got the ear infections under control her sinuses became our nemesis. We have fought many sinus infections and bladder infections. After an ultra sound we found out that Kayla’s kidneys are two different sizes. One kidney is smaller and damaged due to bladder infections so her larger kidney works over time to make up the difference. Despite all this Kayla always has a smile on her face.

We received Kayla’s first power chair on June 27, 2011. It has helped her a lot. Her energy levels are better because she is able to conserve her energy for the activities that really matter. Kayla had her G-Tube inserted on July 19, 2011. Kayla lost almost 3lbs during and after the surgery. 3lbs not a big deal right? Since she only weighed 45lbs to begin with 3lbs was a huge deal. Kayla has gained those 3 lbs back since then. This disease is very depressing for our whole family. We are doing our best to stay positive and find a cure.

At age 11 Kayla lost the ability to walk independently. She must have assistance in almost all aspects of daily life. Eating food by mouth is becoming more troublesome for Kayla as her tremors are becoming worse even with the help of a medication called Artane. Reading is very difficult for Kayla as she has tremors in her eyes (nystagmus) which make it hard for her to focus on the words. Kayla’s handwriting is that of a 4 or 5 year old because her coordination doesn’t allow for her to write properly.

If you had met Kayla when she was younger you would see how far Kayla has come since 6th grade. At the beginning of Middle School Kayla was a very shy young lady. Kayla was starting to really become aware of just how different she was. Her wheelchair makes people curious and they stare especially kids. This only worsened the issues of her shyness. In 7th grade Kayla had Katelynn Dugas and Lauren Pizzaloto as her teachers. They helped Kayla begin to come out of her shell. Along with the help of countless other staff at Live Oak Middle Kayla became well known throughout the student body. In 8th grade that same student body voted Kayla as their Homecoming Queen.

Upon entering High School Kayla joined a club called R.E.A.C.H. (Respect Everyone And Create Harmony) which is an inclusion club sponsored by her teacher Jessica Bonura. This club has been a Godsend! It brings kids with disabilities in contact with kids without disabilities. Last year Kayla became friends with several of the Live Oak Cheerleaders who are in the club. They encouraged Kayla to try out for the Cheer team. Kayla was chosen to cheer at the games that are compatible with her wheelchair.

In June of 2015 our family took another hit. I was diagnosed with Stage 2 Invasive Ductal Carcinoma Breast Cancer. I had a double mastectomy in July 2015 and started reconstruction while starting chemo. During this time our Live Oak Family made sure that Kayla and her sister Isabella were well supported & taken care of. I had 16 rounds of chemo and 30 rounds of radiation. My 8th and final surgery was in December of 2017. I am now 3 years cancer free.

The Great Flood of 2016 was another hit for our family. Our house like many others flooded on August 13,2016. We lost 90% of our belongings in the process. The power chair that Kayla had at that time went under water as well. We were able to get it working for a while after cleaning it. It was just after the flood that Kayla was crowned Live Oak Middle’s Homecoming Queen.

Our moving to the Live Oak district was one of the best decisions we have ever made for our family. We have had support from our community since day one. Kayla being on the cheer team this year is so heartwarming. We have always told Kayla that she can do anything she sets her mind too. She is proving to us and the whole community that being in a wheelchair and having a disability isn’t going to stop her. We hope and pray that her being on the cheer team this year will inspire other young children with disabilities to reach for their dreams."

This story was brought to WAFB via the station’s Facebook group dedicated to stories of triumph and celebration. We share these stories with the hope that they will make viewers smile, feel hopeful and inspired.

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