RAK stands for Ryan, Amberly, and Kayden. Kayden is truly the inspiration for RAK Apparel Company. You see, our journey started on December 1, 2014, at 9:21 pm. Kayden entered the world! And boy, does he bring us so much joy! Our journey began with quite a punch. We lived on the postpartum floor of the hospital while Kayden was in the NICU. My husband and I refused to go home. We spent our 1st holiday together, Christmas, there in a tiny NICU room. The nurses were amazing and helped make the hard day a special one. After a month in the NICU, having a permanent feeding tube placed at 18 days old, along with a Nissen and muscle biopsy, we made our way home!
We chose to do a muscle biopsy in hopes that we would find out a diagnose for Kayden. We started therapy ASAP—speech, Occupational, and Physical therapy in our home and at a facility. About nine weeks later, we met with our neurologist and found out nothing! NOTHING! No disease was found. For some that would great news, but we knew that we still needed to search for answers. Kayden continued to receive therapies. We even added aquatic therapy to the list. At the time, he was getting a total of 12 treatments a week. Looking back, that's insane!! It's a lot of hard work for him. He has earned his name "Kayden the Fighter." Our journey has been filled with surgeries, blood draws, x-rays, tests, and more hospitalization than I can even remember. There were a lot of times that we wished we had a diagnosis. We had questions, we felt guilty, the future was unknown, and it hard to get insurance to cover medical items without a diagnosis. Fast forward, two years and out of nowhere, in the middle of packing our first home, the home we brought Kayden to, we received the most challenging phone call. The genetic counselor on the other end said, "I have a diagnosis." Thankfully, my husband was home. I put her on hold, ran to my husband, and told him what she had just told me. We sat on our mattress that was located on the floor since our bedroom furniture was currently packed. I asked if I could record the conversation, knowing that we would forget everything she was about to say. As she spoke, our hearts were racing, and you could see the fear and concern on each other's faces. The moment that we had longed for, the moment we wish we had gotten two years earlier. We were about to have the answer. A solution we often question if we should have ever gotten. I mean, it was nice living in the place of the unknown. Your hearts were safe. She informed us that they had requested more staining to be done on the muscle from 2 years ago. When they did, they saw that Kayden was missing merison. To this day, I can hear her voice as she says he has what's called MDC1A, Merison Deficient Congenital Muscular Dystrophy, also known as LAMA-2. She mentioned that LAMA-2 was recently a new disease, and she didn't have much information about it. We hung up the phone and did what most anyone would do. Google. As we began to read, the prognosis for our beautiful baby changed, and I could feel my heart physically breaking, and tears began to fall. My husband was feeling the same emotions. We clung to each other as was let our new reality set in. How can it be that the most precious gift we have ever been given was now only ours for a short time? We gave ourselves about a year before sharing this diagnosis. Not because we didn't want people to know but because our hearts had endured so many emotions. Our doctors, therapist, and family were the only ones who knew. When we shared Kayden's diagnosis, we were overwhelmed with the amount of love and support that we received.
We immediately went from 12 therapies a week to only 2. Kayden's body is frail and can not be overworked. I can't say that our hearts will ever fully mend, but I know that Kayden has helped give us a purpose. We started to advocate for those living with the same type of Muscular Dystrophy. For almost five years, we have helped raise money for the Muscular Dystrophy Association in our area. We had friends, acquaintances, and our loving family to help support us throughout the last nine years when we needed it. We feel in our hearts that now it's time to return the favor. Our heart and goal with RAK Apparel Company are to help diagnose/undiagnosed children and their families with medical expenses. Our heart is to show God's love through our company. We have been extremely blessed, and now it's our desire to be a blessing to these families. We believe that by sharing our story, we create a road map for those who will go through a similar journey.
Please join us as we bring awareness, share other's journeys, and launch our brand. We have found that God, prayer, and faith have been our key sources of helping us find joy and purpose.
With Love,
Ryan, Amberly, & Kayden
RAK Apparel Company
