Support Kayden's Battle with Niemann-Pick Type C

Dear friends, Family, and Kind-hearted Supporters,

I hope this message finds you well. Today, I reach out with a heart weighed down by the unimaginable challenges my family is facing. My precious son, Kayden Smith, has been diagnosed with Niemann-Pick Disease Type C (NPC), an extremely rare and progressive neurodegenerative disorder. This cruel disease affects his brain, liver, and spleen, and it has turned our world upside down.

Kayden was born June 6, 2012, healthy and cute as can be. When Kayden was in kindergarten, we started to notice some learning issues we didn’t think much about it because his dad and I had learning issues as well. So, in 2020 he was tested and diagnosed with ADHD. As the years progressed, we started to noticing skill loss, having trouble retaining information, and started to not sleep. We know it had to be more than just ADHD so after talking to his doctor we decided to test him for Autism. In August of 2021 he was diagnosed with autism the doctor said he was board line but because he had some symptoms she went ahead and diagnosed him. This is where we feel like we should have questioned more but we failed. After the autism diagnosis he still continued to regress in skills still having trouble retaining information. Which worried his dad and I we didn’t understand it. Then on February 20, 2023, my parents called and told us Kayden had, had a seizure. Never in this journey had I felt worried until this moment. After that we had even more concerns and tried to ask what could be causing all of this it just didn’t make any sense to us. Autism didn’t run in our family and seizures didn’t run in our family either. But all we got back was it was all due to his autism diagnosis. Finally, after getting nowhere with his doctors, we went and got a second opinion at Mayo Clinic in Rochester Minnesota. There we saw neurology and genetics. Neurology had run test they did blood draws, EEG, LP, MRI, and neurological assessment. After all the test they had just changed his seizure medication because all the test they had come back was normal. Genetics did whole genome sequence test. They told us not to get our hopes up that only about 30% of the time do people get answers. We left Minnesota a bit discouraged because we still had no answers. In July of 2024 we got a phone call that changed our lives forever. They informed us that Kayden had an ultra-rare disease called Niemann pick type C, and this disease has no cure. They gave us 1-2 years if we chose not to do treatment and 5 years with treatment possibly.

Watching Kayden's health deteriorate has been a heart-wrenching journey filled with emotional and financial struggles. As his condition worsens, the urgency for specialized care and treatments grows. The mounting medical expenses and the cost of essential therapies have far exceeded our means. Without immediate intervention, doctors have given us a devastating prognosis of just 1-2 years. However, with your generous support, we have a chance to extend Kayden's life and give him the care he desperately needs.

We are reaching out to you, our cherished community, with a heartfelt plea for help. Your donations will directly contribute to:

- Medical Treatments: Vital therapies and medications to manage Kayden's symptoms and improve his quality of life.

- Home Care: Ensuring Kayden receives the necessary care and support at home, surrounded by love and comfort.

- Specialized Equipment: Essential tools and devices to assist in his daily activities and enhance his comfort. We have bought a Volkswagen Atlas. This allows us to have room for his mobility stroller and our luggage when traveling to his treatments.

Kayden finds joy in the simplest pleasures, like motorcycle rides and watching shark movies, especially the Meg series. Also, Disney singing movies as well. He used to be an active child, participating in basketball, baseball, soccer, and bowling. He loves walks and playing in the ocean, moments that bring a smile to his face despite the challenges he faces. His Facebook page we update how things are going and what we’re doing and trying to find treatment. https://www.facebook.com/profile.php?id=61564973214626 

Instagram-Kaydens_fight_npc

TikTok- @kaydens_fight_npc

No contribution is too small, and every donation will make a significant impact on Kayden's life. If you can help, please donate, For any questions or to discuss how you can assist, feel free to contact me at [317-801-2200] or [email redacted]. Your kindness and generosity mean the world to us and will provide much-needed relief as we navigate this challenging journey with Kayden.

With heartfelt gratitude,

Justin Smith & Jesika C