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 just want to say thank you for understanding the need for awareness for Lissencephaly
It's so wonderful to have awareenss and colors to share.
You all are great
Got a call the same day I emailed and received enough information to talk to my family doctor.
It feels great to know there is help out there
We Are Rare and the other groups associated with, has been my go to over what the doctors do or don't say. My grandson's care providers did their job, well, for the first 6 months+ of his life, but they were not informative of Schizencephaly and I had to do mostly all of my own research. Thank goodness I found WeAreRare.org upon the first page of Google! I hope to one day travel and attend an event or conference, or even just families of others affiliated with the organization.
I feel so fortunate to have come across We are RARE a few years ago. I have been blessed with connecting with other parents whose child share the same diagnosis, with valuable knowledge and information including resources for my child, and the amazing opportunity to attend a very well organized conference with guest speakers to learn more about schizencephaly. Thank you!
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.
Great advice on transition to whole food diets. Life changing and our Chloe is doing wonderful
I am so grateful for this organization. It has helped me to become very knowledgeable for things for my son.
Tricia is a fabulous woman. She’s established a great nonprofit that is helping lots of people around the world. Tricia reaches out to lend a hand to help with other causes as well. I am extremely grateful for all of her work and kind heart.
learned so much about my son through Tricia. She gave us some great advice on helping our son open his hands, Now he's grabbing for toys.
We hope to make it to the next conventions
We have nothing but wonderful things to say about what this organization taught me at the convention. Thanks you so much
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.