I was born in May 1985, with a typical birth.  However, 6 hours after birth it became clear...I was anything BUT typical.  I had multiple issues from infancy on.  This included multiple doctors appointments, surgeries, and so much more.  At age10, we moved from Texas, to Maryland. It is here that I started being followed at Hopkins for services regarding my Cleft palate, but doctors were still mystified.

A few days after my 11th Birthday, that ALL changed.  I attended a Camp for kids who were born with a cleft lip/palate and it is here that a doctor from University of Maryland saw me and asked if had ever heard of Kabuki Syndrome, and although I always knew I was not typical, finally having a name gave me a great sense of  relief,  I was followed by this doctor until age 17, but because things were never changing we started focusing more on my omany orher health issues at that point.  I just went through the motions doing all the "normal" things (dealing with surgeries and medical issues as they came up, but more importantly graduating from High School and Community College, and  even from a University with HONORS).  In Summer 2012, we heard that Hopkins was doing testing on the gene for Kabuki,  We went got me tested and it was positive for type 1?  Over the last few years, I have still been dealing with Medical issues, as is often the case for those with Kabuki.  This past year, I spent 3 months at Hopkins with a distended abdomen and pain (drained 60 pounds of fluid), 2 brain bleeds, and a stroke!  I am doing much better now though

Something that has given me stability over the last year is my involvement with Kabuki Syndrome Foundation as a Volunteer.  When I was in the hospital at least weekly there was always a text or phone call from someone from the foundation,and now that I am on the mend, I am getting involved with them again through doing different projects.  Kabuki Syndrome Foundation is a cause incredibly important to me, and I am so excited to be able to raise funds for this incredible organization, somethong which gives families like mine a sense of hope and a senseof belonging and a sense of not being alone (which Iwish had existed when I was first diagnosed) 

Will you join me in helping to raise money for families like mine?

Kabuki Syndrome Foundation drives research to treatments, creates resources for families, and strengthens the global Kabuki syndrome community. Every donation helps me reach my goal and creates healthier futures for our loved ones with Kabuki syndrome. 

Here's how you can help:

• Donate: Contribute whatever you can. No amount is too small!
• Spread the Word: Share my fundraising page with your friends, family, and social networks. Let’s spread awareness so we can raise more!

Thank you for standing by me, not only today but every day. Please consider donating for the families impacted by Kabuki syndrome. Thank you.