To all the children who attended the KAT6A clinic, Whether you are a child or a sibling of a child affected by the KAT6A Syndrome, I would like to thank you for your patience, compassion, and your incredible tolerance of each other feelings and behaviors. You came to Baltimore after sitting in a car for […]
It feels funny even writing this title, Special Needs Child, what does that mean? All children are special and have different needs. It might be easier to use the other “label” we have recently received medically fragile/technology dependent to describe my son, Toby. Growing up in a small urban community of 30,000 during the 70’s […]
Christmas has always been a big deal in our house. All of us, kids and parents, enjoy the feeling of Christmas. We especially love the glittery, sparkly decorations that come along with it. We always have lots of garland, lights, and decorations in our house—you know—all the sparkly fun things kids love! When you have […]
by Amy Young It has been an exciting few months in our household. We welcomed our daughter, Emma, on July1st, 2018. Jack has been a wonderful big brother thus far. He is beginning to notice Emma more and more each day; there are even times when he seems annoyed by his little sister (as a […]
Hello everyone, I got naturally pregnant in 2013. During pregnancy, the diagnosis of hydronephrosis in two kidneys was reported in the 23rd week at the baby and then issue was followed by doctors. A caesarean operation was performed at the 38th week due to a decrease in the water in the uterus and an increase […]
Important Safety Tips You Must Teach Your Child if Lost It’s a parent’s worst nightmare and can happen so quickly. You are in a public place and your little one is right next to you, but you look away for one second, and he is gone. Why teach young kids what to do if they […]
Our daughter was born on the 1st Februrary 2009 in Son Espases University Hospital, Palma, Mallorca. She was a 36- week baby, very tiny for her age since it has been diagnosed with slow growth in the last months of pregnancy. She took long to be born and was immediately taken to intensive care were […]
Camden’s journey began twenty-four weeks before taking his first breath of fresh air. After a long family move from Kentucky to Washington State, it was brought to our attention during an ultrasound that Camden had a congenital heart defect known as Tetralogy of Fallot. We knew that within months Camden would need to have open […]
Mothers Day 2018. 33 years ago I was about to give birth to my first child, who ended up being born on Memorial Day, 1985. I originally went into labor two days earlier, but a trip to the hospital with irregular contractions resulted in returning home “to wait” Two days later, still no regular contractions, […]
A Message of Hope by Peter Najm My name is Peter. I was born with a rare disease called KAT6A. The faculty of remembering is renewed every year. You erase many huge geographic references. You react recklessly because you realize that the real reason you forget is a gene mutation. The huge trigger of the […]