Kalen & Kyan Kulas Port Crane, NY 6,621 Votes
Meet Kalen & Kyan Kulas! Two adorable little boys, two little lights, two small faces, two awe inspiring mini reasons, set out to teach each and everyone how to love… unconditionally. They were sent here to not only change our world, but yours.
Our two sons, Kalen Adam & Kyan Gray, are both heroes. At only one and two years old, they have lived a lifetime in our eyes. They are happy-go-lucky, unafraid, and appreciative of the small things, well mannered, loving little men, ready to take on this world, but only together as a team.
Both Kalen and Kyan have been diagnosed with a terminal, untreatable, incurable, progressive genetic illness, Spinal Muscular Atrophy, Type 2. SMA does not allow the body to produce the protein essential for the muscles of the body to thrive, resulting in deterioration. SMA first attacks the legs and arms, core muscles, and ultimately the ability to digest, swallow, and breathe. Only one in 6 to 10,000 children are affected, making SMA the number one genetic killer of children under age 2. Spinal Muscular Atrophy is a spectrum disease, ranging in severity, with varying abilities and rates of progression. Both Kalen Adam & Kyan Gray have Type 2. While their future has many possibilities, it is widely based on factors such as therapies and experimental treatments. Through any and all options available, we hope to be able to prolong further progression of the disease for as long as possible, allowing Kalen & Kyan to have a somewhat traditional upbringing complete with school functions, sports, girlfriends and even college!
We aim to give our little heroes, Kalen and Kyan a complete and normal life, just like all other children their ages deserve. In order to do this, we absolutely must be able to have access to a handicapped accessible vehicle. Not only for one little miracle, but for two. <3
The FREEDOM to go wherever the boys need to, whenever they need to is not only optimal, but absolutely essential. We, as a family, participate in Physical Therapy, Occupational Therapy, Hippotherapy, attend many Doctors Appointments in NYC with SMA Experts, as well as many local pediatrician visits and many more! Please Spend a moment reading our story, a second voting for us, and a lifetime remembering our story, our two little miracles, our boys… our absolutely blessed and amazing boys.