This page is dedicated to our daughter Jazlyn Marie who was diagnosed with semilobar Holoprosencephaly, from which her other conditions have stemmed from. Holoprosencephaly (HPE) is a birth defect that occurs during the first few weeks of intrauterine life. HPE is a disorder in which the fetal brain does not grow forward and divide as it is supposed to during early pregnancy (incomplete cleavage o
f the embryonic forebrain/failure of the prosencephalon to cleave into the cerebral and lateral hemispheres). Children diagnosed with HPE may have a small head (microcephaly), excessive fluid in the brain (hydrocephalus), variable degrees of mental retardation, epilepsy, endocrine abnormalities, or abnormalities of other organ systems such as cardiac, skeletal, genitourinary, and gastrointestinal. Abnormalities of muscle tone and impaired motor abilities are present in virtually all individuals with HPE. The degree of delay and neurologic problems generally correlate with the severity of the brain malformation. Mildly affected children may exhibit few symptoms and may live a normal life. It is estimated that HPE affects between 1 in 5,000-10,000 live births. Since many pregnancies with a fetus diagnosed with HPE end in miscarriage, the frequency of HPE among all pregnancies may be as high as 1 in 200-250. Current studies indicate that only 3% of all fetuses with HPE survive to delivery and the vast majority of these infants do not survive past the first six months of life. Thankfully, our Jaz has defied the odds...
This page was inspired by another page we found on Facebook (Cayden's Journey with Trigonocephaly (Metopic) Craniosynostosis). We will try to post updates so that everyone can keep track of what is going on with Jazlyn. We will be posting pictures of Jazyn's journey through this whole process. We look forward to your support and thank everyone that love's our little girl enough to keep track of her journey through this process. Your prayers are welcomed and we thank everyone for their support! Hopefully this will be a page where other parents that have a child going through the same thing can find information and encouragement! Please feel free to share this page with your friends, any and all support helps.
