Bruno’s journey began in 2019. From his birth on October 11th, 2017 we already knew that something was happening but we didn’t have a final diagnosis until February 21st, 2019. Even though the pregnancy was normal, when I was 37 weeks pregnant Bruno hadn’t turned yet. He was going to be born breech and my […]
I was born in 1989. The birth lasted for 33 hours. I was measured to be 49 cm and 3160 grams. During birth I had swallowed amniotic fluid. I could not breathe, and my skin turned blue. The doctors took me to the next room to pump. I also had a hidden cleft palate, so […]
January 28, 2019 18 years and 31 days after he took his first labored breath, we have a diagnosis for my boy. The genetics department called a couple of days after Christmas to share the news, and I have been reeling since. For 30 days now, I have been down the rabbit hole of investigating […]
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 […]