This is my beautiful granddaughter. She is one of the many faces of Schizencephaly. To find out more about this birth defect, caused by a fetal stroke in utero, you can go to WeAreRare.org. (You can also make a donation to help raise awareness) Although there is no cure for this, raising awareness is vital to understanding what this precious little girl is and will go through during her life. She is part of my heart and soul and I love my tinker bell to the moon
Now that you've learned a little more about schizencephaly, please consider donating to the nonprofit organization that reaches out to families in need, and supports the research that's on the horizon for our cause.
Hello, I am Carolyn, and I am 64 yrs. old. Before I was born on New Years in 1953, and sometime during my gestational life, I had a stroke. It caused something in me called Schizencephaly and I was in my fifties before being diagnosed with it. I have a small head, low hairline, small features, and the left side of my mouth is slightly higher than the other. I have one pupil smaller than the other also. I have always been clumsy, with balance a little off, and was always the last one chosen for sports during Physical Education. By the time we found out I should have had Adaptive P.E. throughout school, I was already a Junior in High School and so many wasted years had already been lived. I could have been spared the torment of my peers making fun of me just by placement in the proper classes. It did affect me, gave me social anxiety which bothers me to this day. I have had problems with my neck all my life (short neck syndrome too) and just had Cervical Fusion Surgery of C-4, C-5, and C-6. I was losing feeling in my arms and hands and dropping things a lot. That has been fixed. I will always have some degree of Foot Drop, left foot, and have to watch my balance. I have a Diabetic Alert Dog, Regis, who is my Service Dog. Yes, I have Diabetes too. Its a lot to deal with everyday.
I think if people are made aware this condition exists, and it can be diagnosed long before a person hits their fifties, then maybe a lot of prevention can take place in developing other conditions that seem to go with Schizencephaly. To all of you who are my age and have it, I care. To those of you who are raising children with this condition, I was one of them. As an adult with the condition, I reach out to those children and adults and say, "I am one of you."
Our grandson was diagnosed at 4 months (3 yrs and 2 mo ago). My daughter's pediatrician not only couldn't pronounce it she had no idea what it was and told us to "wait till Monday and call someone." Thanks to Tricia and this group of people we may be rare but we are not alone. We learned more from this organization than the doctors we first contacted. We never have to go through any of Andrew's diagnosis alone. As Andrew continues to learn and grow we continue to educate and spread awareness. Thank you Tricia and We Are Rare for giving hope to all those facing the unknown. God bless us all!
I've known the founder Tricia since we were in high school. You'll never see passion like hers in everything she does.
She has always been that person people went to for advice and it's clear she's made it her life mission to stay that way with her son's disorder.
She and the board she works with all pull things together and stay active in the community raising awareness
When we were in the hospital this year we were constantly being checked in and provided a hand out sheet from this foundation to give to the hospital.
It helped so much and helped them understand how Schizencephaly works
Thank you RARE for helping me understand the blended diet and seizures my daughter has
We Are ARE has provided myself and my daughter's family so much information and resources for her condition. The support within the community of parents and family of loved ones diagnosed with schizencephaly has gotten me through very difficult times and the knowledge shared has made me feel informed, prepared, and also helped me become the passionate advocate I am today for my daughter's condition. I am so grateful for this organization.
This non-profit has been a beacon of hope and support. The information provided and support offered were pivotal in learning about and coping with my son's diagnosis of Schizencephaly. They are compassionate, responsive, and insightful. I'm now fortunate enough to be part of the team and to provide support for families coping with a diagnosis of severe Schizencephaly. Fantastic organization!
Not sure where we would all be without the support an encouragement from this organization it has been wonderful and they are extremely informative about Schizencephaly which is not a well known ir researched issue. This organization is Amazing