Wesley’s Front Row Experience: Paw Patrol
Title: Wesley’s Event, Paw Patrol, Springfield, MO
Illness: Hunter’s Syndrome
Date: January 16, 2018
This is one awesome little man who pulled our heartstrings the very moment we met him! He is a very special little boy who brings joy into the lives of his super, amazing family! Wesley is 6 years old and lives with Rena his Mom, Matthew his Dad and the ever spunky Ava who is 2 going on 22!
Wesley was diagnosed with Hunter Syndrome May 8, 2015 when he was 4 years old, only 3 months after Ava was born. There are 2 different types of Hunter Syndrome and the one that Wesley has isn’t the one you would choose to have. Wesley is currently in Hospice and his amazing parents have chose to give Wesley quality of life over quantity.
Wesley was nominated for a Front Row Experience from Social Worker, Nancy Thomas at Arkansas Children’s Hospital. Nancy was told about Front Row Foundation from Angela Welch whose son Grady had his Front Row Experience in 2015!
What is Hunter Syndrome? Well, Wesley is missing an enzyme that breaks down the long chain sugar molecules, also called glycosaminoglycan’s (GAG), that are essentially the chemical waste from all cells. These long chain sugar molecules collect in all of the soft and hard tissues in his body; it atrophies the brain and causes delayed myelination and severe global delays. His central nervous system is affected by the build up. It can thicken the nerve pathways causing things like carpal tunnel and nerve pain. His respiratory function is impaired by the GAG build up as it has made his airway narrow and the lungs to grow thicker making him at risk for respiratory failure. It also causes the liver and spleen to grow larger than average as it stores the chemical waste. The heart valves and walls are thickened and causes mitral and aortic valve insufficiency, sometimes requiring repair. Joints are one of the things that are most affected as the GAG build up causes joint contractures which impacts mobility and causes pain. Hunter Syndrome is a progressive disease and due to effects of the syndrome on the organs Wesley will only live between 10-14 years of age. This is why the family is working each and every day to give Wesley the best quality of life they can.
Wesley was getting infusion therapy once a week to potentially slow down the progress of Hunter Syndrome. Wesley was having Medical anxiety and was refusing to play with his toys for days at a time. That is when his family made the tough decision to forgo the therapy and live every day as it would be his last. Wesley is calmer and much happier that he is no longer receiving these infusions and other aggressive therapies. He is able to be at home with his family and participating as he can in activities as his body allows.
Wesley is a sunshine! He loves to laugh, play and chase. He is a snuggle bug. He will light up any room that he is in and all that are around him will be changed for the better. Wesley is non-verbal but does communicate his needs effectively through sign language and knowing his mother very well.
Wesley is stable and happy and the family is taking it one day at a time. Wesley loves the beach and throwing rocks into the water. He likes to hike, but due to lung capacity, he is not able to hike any longer but they use his all-terrain stroller. His favorite TV show is Paw Patrol. His favorite movie in the whole wide world is the Iron Giant! Wesley loves his tablet and makes car sounds when he watches racing!
Wesley’s ultimate Dream Event is to see Paw Patrol Live! Wesley watches Paw Patrol several times a day! He also plays all the games and has all the figurines! He is limited in speech but watching Paw Patrol captures his attention and brings enormous smiles and joy to his face. Wesley is developmentally delayed and it is often difficult to engage, but Paw Patrol is by far his favorite and always captures his attention and makes him beyond happy.
Wesley was chosen for a Front Row Event to be held in January to see none other than Paw Patrol Live!
On January 16th a long, beautiful, Limo pulled up to pick up Wesley and his family at their home in Little Rock, Arkansas! This was the family’s first time in a limousine all together. They were all able to stretch out and catch some zzz’s on the way to Springfield, Missouri for Wesley’s best day ever!
They headed to the hotel where Event Directors Bex and Joreen were waiting. The adults grabbed coffee at the Starbucks in the lobby and headed up to the hotel room to get the interview underway. Once we all walked into the room Wesley and Ava saw all the gift bags with Paw Patrol Stickers and they were super excited to dig into the gifts! Instead of waiting to open the gifts the kids got right into opening them so they had some fun things to do while the interview was going on.
Ava loved her new pet carrier with puppy and Wesley had so much fun opening everything up and checking things out! It looked like Christmas with all the tissue paper and toys everywhere. It was so heartwarming to see how excited Wesley was about all the Paw Patrol toys, rain boots and fruit snacks! The kids truly enjoyed their time and it allowed for the adults to talk.
It was heartbreaking to learn about everything the Leffert family has gone through and still has to go through in the years to come. Wesley is such a joy to all who meet him.
After the interview we packed up all the gifts and got ready to head out to dinner. Everyone was really hungry as it had been a long day already. We got into the Limo and headed to The Brewing Company.
Once we all arrived it was hard to miss our table as there were tons and tons of Paw Patrol Balloons and gifts at the table! The kids were so excited to see all the balloons! We ordered some appetizers, drinks and dinner. We had great conversation and really learned more about this amazing family and all the trials they have been through these past 6 years.
It was time to go!! We loaded back into the limo and headed to Juanita K Hammons Hall for the Performing Arts to see the Pups with Paw Patrol! Upon entering we met up with Julie who works directly with the Pups. She gave us our VIP goodies so we could do a Meet and Greet with the Pups after the show! Ava and Wesley both received huge activity books from the Pups themselves! We bought the kids drinks and cotton candy and everyone was so excited to get the show started! We made our way to our seats and we were 3rd row Center \o/
Wesley was so well behaved and just sat there with anticipation of what was yet to come. Just watching Wesley’s family watching every expression that Wesley made pulled at our heartstrings. As soon as the show started you could see and hear the excitement in Wesley’s voice! The kids did so well and watched every second of the show. Even at intermission Wesley was content just waiting for the show to begin again. Joreen was taking photos and was able to catch some great photos of Wesley’s expressions! After the show was over we all waited to be escorted by Julie for Wesley’s Meet and Greet with Chase and Skye! The team at Paw Patrol was amazing and allowed us to go first to meet with the pups. It was an amazing experience from start to finish and by the looks of it; this was Wesley’s Best Day Ever!!!
We all climbed back into the limo to head back to the Event Directors Hotel. We went up to the room and did our Post Interview. Rena and Matthew were so pleased with the entire day and they were grateful for the gift of a day with family. Rena said that this was a perfect day… to have these memories made as a family is so precious. No one knows how long they have with Wesley, and to be allowed to make memories together as a family like this will never be forgotten. To allow Ava to make once in a lifetime memories with her brother is something that is priceless. She hopes that she will remember this day forever; but also knows that Front Row Foundation has documented the entire day and the will have photos and video to cherish forever!
It was time to say Goodbye. We all walked back down to the lobby, gave everyone hugs before they loaded back into the Limo for their ride back home to Little Rock.
Mission Accomplished \o/ Wesley had an amazing day and Front Row Foundation created a day that will be remembered forever!
You are a ray of sunshine and brought us both so much joy! We hope you loved every second of Paw Patrol as much as we did! We love you buddy! Be well and stay strong!
Bex and Joreen