Katie's clinic for Rett Syndrome
Don protégé
My Dearest Colleagues,
This is my daughter Kriti, who soon will turn 6 in January. She loves to read books & sing songs. Even though Kriti is SUPER social (unlike her mother); she can’t speak or utter a single word.
You see, last year around this time Kriti started having recurring epileptic seizures that wouldn’t subside. Kriti underwent a battery of tests in an effort to understand what was causing these attacks. One of the tests covered a neurodegenerative disease called Rett Syndrome that explicitly affects girls (1 in 10,000), caused by a gene mutation in MECP2. It was a rare ~ but a possibility.
However after the results had been completed, we received the devastating news that the test had confirmed that Kriti had Rett Syndrome. She would never speak and would continue to have Autism-like symptoms that would worsen over time.
The diagnosis was difficult to digest for our family. My husband and I went through waves of distress, anxiety, and guilt followed by depression. We were faced with the scariest question a parent could pose: ‘Will we outlive our child ?’
Fortunately there is hope. Clinical research have reversed Rett symptoms in mouse models, and there are several drug trials with promising results. In her lifetime, Kriti could undergo a possible drug trial and would be able to tell us how she felt growing up all these years.
This brings me to Katie's Clinic at the UCSF Benioff’s Childrens Hospital, which is at the forefront of treating girls with Rett Syndrome disease while providing much-needed support to parents and critical knowledge to schools & care teams.
This clinic is where my little girl found her voice - her communication device Tobii Dynavox (a tablet computer which tracks her eyes). She is now learning to use this device to communicate her needs. Kriti also receives all-day appointments several times a year which include speech, self-help living skills, OT/PT, pediatrics, and neurologists. Heck, they even have a music therapy class that Kriti loves.
This clinic has served families all over the world and has not turned away anyone due to lack of insurance coverage. This organization solely runs on grants from foundations and personal donations. Program Director and Pediatrician Dr. Mary Jones travels all through the state of California; attends IEPs (Individual Education Plan) at school districts and other medical appointments.
How can you help?
Please share this message with your networks to raise awareness about this disease.
I encourage you to open your hearts to this charitable organization that helps thousands of families just like ours.
Remember, if you contribute via the GoFundMe.com link below, LinkedIn for Good will match employee donations $3 for every $1 in honor of #GivingTuesday during the week of Nov 29,2016 - Dec 2, 2016.
https://www.gofundme.com/katie s-clinic-for-rett-syndrome
Thank you so much for your thoughts and kindness.
Kavita
This is my daughter Kriti, who soon will turn 6 in January. She loves to read books & sing songs. Even though Kriti is SUPER social (unlike her mother); she can’t speak or utter a single word.
You see, last year around this time Kriti started having recurring epileptic seizures that wouldn’t subside. Kriti underwent a battery of tests in an effort to understand what was causing these attacks. One of the tests covered a neurodegenerative disease called Rett Syndrome that explicitly affects girls (1 in 10,000), caused by a gene mutation in MECP2. It was a rare ~ but a possibility.
However after the results had been completed, we received the devastating news that the test had confirmed that Kriti had Rett Syndrome. She would never speak and would continue to have Autism-like symptoms that would worsen over time.
The diagnosis was difficult to digest for our family. My husband and I went through waves of distress, anxiety, and guilt followed by depression. We were faced with the scariest question a parent could pose: ‘Will we outlive our child ?’
Fortunately there is hope. Clinical research have reversed Rett symptoms in mouse models, and there are several drug trials with promising results. In her lifetime, Kriti could undergo a possible drug trial and would be able to tell us how she felt growing up all these years.
This brings me to Katie's Clinic at the UCSF Benioff’s Childrens Hospital, which is at the forefront of treating girls with Rett Syndrome disease while providing much-needed support to parents and critical knowledge to schools & care teams.
This clinic is where my little girl found her voice - her communication device Tobii Dynavox (a tablet computer which tracks her eyes). She is now learning to use this device to communicate her needs. Kriti also receives all-day appointments several times a year which include speech, self-help living skills, OT/PT, pediatrics, and neurologists. Heck, they even have a music therapy class that Kriti loves.
This clinic has served families all over the world and has not turned away anyone due to lack of insurance coverage. This organization solely runs on grants from foundations and personal donations. Program Director and Pediatrician Dr. Mary Jones travels all through the state of California; attends IEPs (Individual Education Plan) at school districts and other medical appointments.
How can you help?
Please share this message with your networks to raise awareness about this disease.
I encourage you to open your hearts to this charitable organization that helps thousands of families just like ours.
Remember, if you contribute via the GoFundMe.com link below, LinkedIn for Good will match employee donations $3 for every $1 in honor of #GivingTuesday during the week of Nov 29,2016 - Dec 2, 2016.
https://www.gofundme.com/katie s-clinic-for-rett-syndrome
Thank you so much for your thoughts and kindness.
Kavita
Organisateur et bénéficiaire
kavita trivedi
Organisateur
Cupertino, CA
Erica Robertson
Bénéficiaire
