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
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
My son was diagnosed with absence seizures in 2010. His Eeg showed 200 seizures per day. This was life changing for our family! We have suffered through medicating my child and awful side effects, experiencing breakthrough seizures- absence, atonic, myoclonic, grand mal, petite mal, simple partial, complex partial, generalized, and learning he has brain atrophy. I have advocated for him and learned from every experience, now 5 years later, he is in remission from his seizures!! :)
We have worked closely with nutritionists, geneticists, neurologist, psychologists, pediatricians, schools, attorneys, government, family, friends, and this organization - We Are R.A.R.E., in efforts to get to a place of success and improvement.
I encourage every one to visit our site and see how you can participate.
I am currently a director with the We Are R.A.R.E. board of directors, as of early 2015. #share wearerare.org
The founder, Tricia Dennis is not the type of parent to simply accept defeat. She keeps on fighting and researching to the bone. Much respect and many Thanks!
My daughter has schizencephaly and this foundation has been wonderful..so much support and information. Tricia Dennis is amazing, we love her. She's helped so many families.
Amazing support when our family did not have answers and needed support
We Love you guys
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I cannot thank this company enough for the information and support they have provided me and my child for school.
For many years feeling isolated and stressed I made a call to this company not expecting to hear back right away they returned my call within minutes and helped me get a plan together for my sons therapists and school that has now been implemented and he is doing wonderful.
For a parent facing the unknown they have been so knowledgeable and helpful, more than any doctor we have been to.
An outstanding company!
wearerareTricia 08/08/2014
Thank you so much!
