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
I am so greatful for this organization! October of 2015 my daughter age 10 at the time had a grandmal seizure. Doctor told me everthing is ok and it sometimes just happen to people once, no big deal she doesn't need meds. A week later same thing happens and now absent seizures. No one can explain it. we get an admit to the hospital and finds out that she was born with bilateral open lip schizencephaly......we were blown away and didint know what to say or do. We were told its little to no information and they could only treat her symptoms on what to come. I prayed vigorously. I real don't like facebook but I knew it had everything. I typed in schizencephaly and found my second family, my refuge, my outlet and support from We Are R.A.R.E. I can't imagine life with this group!
My daughter Carli is 8 and was diagnosed at 4 months with bi-lateral schizencephaly. R.A.R.E has been such a blessing to our family! In June Carli received her Ipad! She absolutely loves it and we are beyond grateful. This is a way for Carli to start communicating with us and without this awesome non profit it's something that wouldn't of happened. We love Rare and appreciate everything they do, not just for our schiz family, but for thousands of others!
This group is awesome. They do everything they can to help those with rare complications. Ms. Dennis does everything she can to help while having a child with special needs. They also work very hard to inform professionals and the general public about these rare complications. I am going to be helping them in the future.
When we felt alone, We Are RARE was there.
When we needed more than a two paragraph description of Schizencephaly to know what to expect in our future besides death, We Are RARE was there.
When we needed advice, We Are RARE was there.
When we needed help because doctors refused to listen about my child's issues at one of our many hospital stays, We Are RARE called and fought for our child.
When my child was failing to thrive and we needed a blender to start a blended diet and advice on where to begin, We Are RARE got us a blender at no out-of-pocket cost to us, and Tricia was there with recipes and how to start.
And now that we are looking into getting an iPad for our daughter, We Are RARE is working on that.
If this isn't a reliable, caring, and trustworthy organization, I don't know what is. I know where I can always turn when I need help for my child and her disorder.
Thank you so much for this foundation.
I found out I had unilateral closed lip Schizencephaly in my 30's. My neurologist had no idea about the disorder and we contacted we are RARE.
They were nice enough to send me and my doctor information and brochures that allowed us to find a doctor that was more equipped to understand my seizures.
I appreciate so much the people with rare that went above and beyond to help with my case specifically and took the time to answer our questions.
My family appreciated it as well.
You all are amazing
We had a wonderful experience with RARE.
When we did a fundraiser this year they went above and beyond. Not sure about the below comment except that they must not have worked with the foundation personally.
We raised 1200.00 and they sent a check to us within three days for that amount.
Thank you so much for an incredible experience and all the help given.
We look forward to doing another fundraiser in the future.
We are Rare is focused on raising funds. As a Non profit the funds raise are not 100% donated back to the family they are raised for. Not sure where the funds are going. My understanding was this Non profit is to be helping fund research and family's effected by Schizencephaly.
They never hesitate to answer a call or email.
We are so grateful that RARE was able to provide our family with support as well as help for equiemt we could not get ourselves
Working with this foundation I have learned so much about the brain and fetal stroke.
The families and their perseverance never ceases to amaze me. It's an honor to be a part of it all
It's an honor and a privilege to be a part of such an amazing group.