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
The medical profession can learn a lot from your organization. I know I have.
It's wonderful to see families come together through a difficult diagnosis.
It does not go unrecognized
Knowing the founder and the time and effort she gives while taking care of her own son with bilateral schizencephaly, it's proof angels do exist.
Each volunteer puts a lot of effort into the work behind what RARE does
That's a family within a family within a family.
Working with this organization for over a year it's been a great honor to get to know familes and stories.
Looking forward to this year's convention
Keep up the terrific work in the community and with families.
It's an honor to work wit a foundation that is about helping educate this world.
We are excited to meet other families at the convention this year. None of that would be possible without WeAreRare.
Thank you for your hard work and all you do
Love light and strength in knowledge. This organization took a bleak diagnosis and Gave us the strength and knowledge to feel empowered.
This year we celevated our first schizencephaly awareness day with thousands of families worldwide
How's that for support.
Thanks to all the great people behind we are rare and paving the way for us to celevate this life not listen to what the doctors tried to tell us.
Our daughter wasn't supposed to be here. It was rare that walked me through that first year and for that we are ready always going to be greatful
Not only do I understand my child's diagnosis, I now have a group that helps one another find even more answers
The first day I emailed we are rare they called that same day. We don't feel alone anymore
Thank you we are rare!
There are no words, only love and respect for all you do for so many
We are never in the dark now..
Walking out with the diagnosis three years ago, I was petrified of my own future and having children
I had genetic testing that could rule out gene mutations and found out mine was an isolated brain injury and stroke.
Today I talk to tricia regularly and anytime I have a question someone from rare always walks me through it and takes time to help me understand. .
For the selflessness these families have in taking time to help others with schizencephaly while they have children with the same disorder or they themselves have it, there are no words. Rare is a beacon of hope for us now.
A few months back we had concerns over my sons position and neck curving. This organization got my child a special pillow for better support and positioning.
When we were lost with no ideas they stepped up to find a solution and we now have Gabriel using the pillow all the time. So happy I know the families behind this organization also. It's great that they are active in so many families lives.
Sometimes me and my husband say we have had more support through them than any family or friends . Because they are family to us.
Thank you everyone at we are rare.
This time last year we had no answers and many questions about Schizencephaly and i was guided to this foundation by my doctor.
Today I'm the one educating others about it because I've learned more through we are rare than any doctor told me.
If anything I've had nothing but support and love through every issue I've faced
It's nice to know there is an organization that is there now.
I have had so much assistance in understanding my daughter from this foundation.
I appreciate all the helpful information provided about optic nerve damage and how to get vision therapy.
Keep up the great work guys
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.