Kaitlyn Elyse Leasure

January 2, 2001-June 10, 2022

Celebration of Life on Thursday June 30th

10:00am

Bethlehem Lutheran Church

2100 Wadsworth Blvd

Lakewood, CO 80214

Kati Leasure came into this world a little later than expected and left way too soon. Our family walked many miles around Crown Hill Lake in the days leading up to her birth trying to coax her into the world. This is when Amy suggested the name Goose for her soon to arrive sibling. On January 2, 2001, she finally arrived, and we chose Kati over Goose because it reminded us of someone fun and adventurous although, several people have always called her Goose. Seven days after her birth, she was admitted to Lutheran Hospital with a fever. This would be the first of several hospital admissions that didn’t really give us an answer. When Kati was 2, we noticed that she wobbled when she walked which several doctors thought she may outgrow. Years of waiting, wondering, and testing wasn’t giving us any answers. Kaitlyn’s pediatrician, Dr. Gablehouse, was the first of what would ultimately be a long list of world class doctors that have worked with Kati over the years. She got us to the diagnosis of Ataxia Telangiectasis (AT) when Kati was 2 years old. We remember clinging to our precious toddler with panic in our heart and thinking we couldn’t handle this. Luckily our faith got us through the initial shock and over the next 19 years we learned God had big plans for the family.

Shortly after the diagnosis, we decided to give Kati as much opportunity to stay healthy and strong as possible. Recommendations for weekly speech therapy, physical therapy and, occupational therapy in addition to many specialists that wanted to see her frequently quickly became overwhelming and could have easily drained the fun out of Kati’s life. This wasn’t going to work for us. Jennifer set the tone early with the doctors on how they would treat Kati during exams. Speech therapy, occupational therapy and physical therapy were known as the “T”s in our house and they needed to be fun or they got dumped. This is when Kati’s adventurous personality and passion for being active began to bloom. She started horse therapy at age 2 and continued to ride weekly for her entire life. She giggled during the trot and loved being off lead. She was only bucked off once, but Wade caught her before hitting the ground. She smiled and immediately wanted back on the horse to finish the ride. We quickly learned that Kati was also determined, fearless and refused to give up. The petite girl with pink glasses surprised and inspired many over the years. This is about the time that she signed up for TOPSoccer to play soccer every weekend. She would reluctantly go to Amy’s games but made it clear that she would prefer to play sports instead of watching them which is also the reason that she wasn’t interested in watching Broncos games with Amy and Wade. She has taken off in more planes than she has landed in having skydived with friends not once but twice. In Costa Rica, she watched her sister jumped off a cliff into the muddy water below. She immediately wanted to try the jump as well, so we figured out a way for it to happen. Wade threw her off the cliff into the water below where her mom, sister and some incredible friends were waiting. When she finally emerged from the muddy water, she gave us her quintessential “thumbs up” and high pitched “I’m good” shout. While in Costa Rica and later in San Diego, she did some killer adaptive surfing that included wicked wipeouts with more thumbs up and “I’m good” shouts. The rest days in Costa Rica included ziplining in the rainforest and riding Quads. Our family also loves riding bikes. We found a tandem recumbent style trike in 2013 that allowed Kati to go on countless rides covering thousands of miles with us. We liked our rides to finish near breweries which satisfied the root beer and normal beer cravings of the group. We recently found a three wheeled fat tire mountain trike that gave her independence on the trails and nervous panic attacks for the rest of us riding with her. This trike is awesome on the groomed trails of Snow Mountain Ranch and Devil’s Thumb where we would ski, and she would ride every weekend. Friends at the Headwaters Trail Alliance frequently told us good areas for Kati to ride and were interested in how they could help make some trails more accessible for her. She kept the trike upright…. most of the time. Flips in the snow were inconsequential but a flip near Corona Pass Road in Winter Park resulted in a broken collarbone. As usual, her spirits were strong during this time of healing, but she only rode 1300 miles that year and was hoping for more. In addition to riding in the summer, she also loved to swim. A friend built a special attachment to her wheelchair that allowed her to sit in the water at Applewood Knolls. This was nice but she surprised people when she would repeatedly jump off to retrieve her dive toys in 6 feet of water. She would swim for hours and loved the way she felt gliding through the water with no one helping her. She also liked snorkeling with friends in Hawaii and with whale sharks in Mexico but was especially fond of floating with her friends that also have AT. They enjoyed floating in the water watching fish as they held hands. We also had the dream of being able to ski as a family. We weren’t sure if this was a possibility but when Kati was 3, a neighbor who volunteered at the National Sports Center for the Disabled took her in a sit ski down the slopes of Winter Park. We learned that it was possible for Kati to ski, and of course she loved it. Skiing was another adventurous activity for her but being with the people of NSCD became her source of pure joy. They took the time to get to know her and treated her like a normal person which we will never have words to express how much we appreciate. Kati spent every Friday for many years in the mountains using a slider, ski bike or sit ski to explore Winter Park. One time she was skiing with her instructor Jeremiah and told him to go faster. She had no fear. The past couple of years, her instructors would download her favorite playlist and ski bike everywhere. One day they were able to hit every lift on the mountain with smiles on their faces. In the chairlift behind them Jennifer’s heart would be full as they would sing, laugh, and gossip for the entire ride. The NSCD also allowed Kati to rock climb, kayak, river raft and use a stand-up paddle board. Kati was treated like the Queen of NSCD and Winter Park-she absolutely loved her friends there. We are also forever grateful for being part of Team 25, an organization created by former Colorado Avalanche player Shjon Podein that brought together families dealing with AT. We were treated to concerts, baseball games, dance parties, camps, horseback riding, and climbing walls. Without AT, we would not have met these families who made our difficult journey one of laughter and life changing experiences. Kati was greeted in heaven by some of these wonderful people who, like Kati, passed way too soon.

During the pandemic time, Kati still rocked with her NSCD friends, but social isolation tried to creep into her life. Jennifer refused to let this happen. We maintained a weekly dinner club with Kati’s grandma and adopted grandparents, Rick and Nancy. We will continue this tradition for many years. Amy and Sylas are also part of this group, and we had many incredible dinners with memorable conversations.

God provided Kati with a caregiver named Veronica who was Kati’s best friend when Amy wasn’t around. Kati often giggled about their adventures and emphasized how much she liked being with Veronica. It was so nice for Kati to have a friend her own age to hang out with. Kati’s time with Veronica was invaluable. God blessed Kati with her sister Amy. They are best friends who voluntarily shared a bedroom for many years and developed an incredible relationship that could be a model for any pair of siblings. They rarely fought but Amy would fight anyone who messed with her sister and couldn’t have been a better advocate for her. Amy and Kati had many adventures together including a week skiing in Aspen with Shining Stars. They skied and were pampered by the best doctors, nurses, and volunteers in the world. They enjoyed pop tarts for breakfast and sugar at every meal.

Kati gave her blessing when Sylas came into our family, and they became very close friends. Sylas was also a staunch advocate for Kati and naturally fit in with her friends. Amy and Sylas would take Kati to the zoo where they would read every sign and visit every attraction. They attended Rockies games and Avs games together. Amy took Kati to Taylor Swift which was a life changing concert. Amy booked adaptive surfing in San Diego and organized the road trip which included getting lost on the Navajo reservation after taking a wrong turn near the Grand Canyon. Amy asked Kati to be her maid of honor and while she won’t be at the ceremony, Kati was there to help Amy say “yes” to the dress. Unlike Sylas, Kati knows what Amy will look like next summer at the wedding. She will be Amy’s Maid of Honor from heaven.

Kati felt fortunate and enjoyed volunteering. Her favorite event was the Wells Fargo Cup where she would sell raffle tickets using her big brown eyes to solicit donations for the NSCD. She typically did this in her ski clothes because she had just finished a day on the mountain. It was one of the highlights of her year. She also was able to make some promotional videos and do interviews on TV to help her charities. She was featured on FOX 31, ABC and CBS. She knew this was helpful for the charities and a boost to her confidence. Kati also volunteered with the homeless working for Living Well Showers at Bethlehem Lutheran Church. She would hand out toiletries and greet guests. She also helped fundraise for our AT Children’s Project 5K run/walk locally as well as at the Disney Marathon in Orlando where we met more families living with AT. Kati also had a personal concert in her honor after being nominated by the Boulder Cello Project. Through Chase the Music, we were introduced to Nick Halsey who composed “Kati’s Ride”. They also played Kati’s favorite songs on cellos-Viva La Vida, Call Me Maybe, Climb Every Mountain and Chim Chim Cher-re. Just like Kati’s wardrobe, her musical tastes were very eclectic.

While adventure, activities, and time with her friends highlighted Kati’s short life, she also dealt with more than her fair share of challenges. Bureaucracies’ incapable of adapting, cancer, pancreatitis, tendon transfer surgery in both feet, foot braces, percussion vests, nebulizers, blood sugar pokes, infusion sticks, wheelchairs, cough assist machines, lots of daily medication, mean people at school, and her last week in the ICU were anything but fun and adventurous but she rarely complained. She accepted most medical appointments and scans peacefully. Occasionally she would ask “why” but also understood her role in helping doctors learn and they loved her bravery. Drs’ Abbott, Parsons and Mahoney as well as nurse Robin stopped by her ICU room to say goodbye. This touched our hearts on the most difficult day of our lives. Kati even showed grace to the humble nurses that couldn’t find a vein for blood draws saying “its ok” with her high voice when they apologized. Grace for the arrogant nurses that ultimately got humbled wasn’t as easily given.

There is a saying that adversity doesn’t develop character….it reveals it. Kati was certainly active, adventurous, determined, and fearless but the adversity in her life revealed her greatest trait-her faith. She knew God blessed her with a good life and she knew He was with her at every step, treatment, and surgery. He gave her peace of heart and love of life. She could have been bitter or angry but instead she chose love, patience, and an incredible zest for life all due to her faith. Because of this we know she is on the other side of eternity having the time of her life and giving Jesus the thumbs up.

Our hope is that we can be a little like Kati. Feisty, determined, adventurous, active, mischievous and, showing incredible character in the face of challenges through faith. She lived a life with no regrets and experienced her world with passion, energy, and faith in God. She woke up every day and asked, “what are we doing today?” Her time on earth was short but she lived her life to the fullest. She will truly be missed.

Peace and Hope Romans 5: 1-5

Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, through whom we have gained access by faith into this grace in which we now stand. And we boast in the hope of the glory of God. Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.

In lieu of flowers, please consider donations to Kati’s favorite charities:

National Sports Center for the Disabled: https://www.nscd.org/

AT Children’s Project: https://www.atcp.org/

Children’s Hospital CO: https://secure.childrenscoloradofoundation.org

Miracles Therapeutic Riding Center https://www.miraclestrc.org/

Headwaters Trail Alliance: https://headwaterstrails.org/

Shining Stars: https://www.shiningstarsfoundation.org/