Kashtyn celebrated his first birthday in September. Due to the very serious nature of his medical condition, every day spent with him is something his parents, family, and friends cherish greatly.
When Kashtyn was born, he was a healthy weight but as he grew, he wasn’t reaching the typical growth milestones.
At his 6-month check-up he showed very low muscle tone. His doctors said he needed additional testing to determine the cause.
At 7 ½ months, Kashtyn was diagnosed with Menkes Disease, which is very rare. There is no cure for this disease currently and it is fatal within the first 3 years of life.
Menkes Disease is an X-linked disorder that affects many systems in the body. It is associated with seizures, stunted growth, failure to thrive, unstable body temperature, and intellectual disability.
Menkes Disease is caused by mutations in the ATP7A gene that is responsible for the transport
of copper throughout the body.
The body uses copper to activate certain enzymes in order to carry out specific functions. When these enzymes are not working normally, serious, and fatal effects can ensue related to the brain, bones, liver, and arteries.
Kashtyn takes many medications and receives physical therapy regularly. Sadly, due to the severity of this progressive disease, even with treatments the outcome is still the same.
Kashtyn is still like a 2-month-old and can’t sit up on his own. He recently had surgery to place a G-tube in his belly for supplemental feeding, hydration, and medication.
Despite all his challenges, Kashtyn loves to laugh and giggle… and has the sweetest smile. His bright blue eyes are very expressive, and he brings so much joy to everyone in his life.
Kashtyn will be adopted as a Sparrow to Redmond High School. Redmond High students will work hard to raise money for Kashtyn through sponsored community service.