Each month we donate a portion of our profits to a child with medical needs through the Legendairy Littles program. The month of September we have selected Tane who has NF Microdeletion Syndrome.
Tane turned one in July and is a sweet little guy who loves to people watch and is always happy. When he was born four weeks early, he spent four weeks in the NICU for premie complications, but his Mama knew there was something else wrong and requested genetic tests. Those tests came back with the devastating results that Tane has a spontaneous deletion on his 17th chromosome, known as NF Microdeletion Syndrome. This is a rare condition, with only 170 known cases worldwide, only 30 of those are within in US. When this gene is deleted, the body lacks the ability to make protein that controls the growth of tumors. Issues with the NF gene are typically characterized by 5 or more flat brown spots that often look like a birthmark. Without this protein in his body, Tane is at a high risk of tumors growing uncontrollably throughout his entire body. He has a team of specialists who he sees regularly for monitoring including a neurologist, geneticist, ophthalmologist, orthopedic surgeon, cardiologist, and oncologist. Tane's mom would like to urge you all to listen to your mom instinct and always advocate for your child.
The Legendairy Littles donation to Tane’s family will help with the ongoing medical needs that Tane requires.