I have a son with Septo Optic Dysplasia or de Morsier's Syndrome. Just doing my best to give him every opportunity in life and all the love he can stand. I also love helping others! If you have any questions about blindness or hormone issues or if you need resources please ask!
I am the mother to 3 beautiful adopted children. 7,5, and 4.
my 4 year old son has XXXY syndrome, Hyper IGE(aka Job-buckley or Job syndrome) A mild form of ectodermal dysplasia
Was wrongly DX'd with Stage 1 Grade 2-3 TCC with Carcinoma In Situ present by a local Uro by a sampling biopbsy. Never had blood or mirco blood. Negitive of Cytology. Cystoscopy revealed a non-specific inflamation under my right ureter. This doctor wanted to wait and see for six months. I said no because he mention biopsy which is synonymous in my mind for looking for cancer...Moved to a Major...
I'm a 37 year old Mom to four boys and two girls. My youngest son was born with Down Syndrome and the many medical issues that come along with it. My lil man has congenital heart disease, lung disease, GI problems. He's survived heart failure, open heart surgery, a diaphragmatic hernia that collapsed his lungs, and he is currently battling failure to thrive brought on by the toll it's all taken...
Ava~Hope for Congenital Diaphragmatic Hernia.
I am passionate about teaching parents how to advocate for their child's health. My third daughter Ava was born with Congenital Diaphragmatic Hernia. CDH is when (inside of the womb) the diaphragm does not form properly. The abdominal organs move up into the chest cavity, compromising the heart and lungs. Half of all babies born with this birth...
