Help Connah Reach SanFrancisco For A Better Future
Donation protected
Hey everyone
This beautiful boy is Connah. Connah was unfortunately misdiagnosed for most of his life. Connah will be 15 at the end of February. Connah is completely non verbal and still in nappies. Even though Connah is generally a happy boy who will hug and kiss everyone he meets, he also can harm himself a lot too. Until the 4th of February 2019, we were told Connah has autism and severely intellectually impaired. But further genetic testing has shown that Connah suffers from an extremely rare mutation on gene PPP2R5D, as well as three other mutations that geneticists are working on but are yet to define. Connah is 1 of only 3 in Australia and 80 world wide to have been dianosed with this condition.
Researchers are hopeful of finding a treatment, and ultimately a cure, for Connah's condition, but until then the mutation has been linked with many conditions, including:
-Alzheimer's
-Autism
-Cancers
-ataxia
-Seizures
And other complications
So the research may not only help Connah but millions around the world by helping find a treatment for other conditions as well. The research for a cure has received funding from the California government. To be part of this ground breaking reseach Connah needs to get to San Francisco on the 28th of March 2019 to help further studies and learn all we can from the Doctors and geneticists.
Here is where I need your HELP. As I've only just got Connahs diagnosis, there is not enough time to get the funds to help get Connah to San Francisco. There is NO research in Australia so it is extremely important to attend the conference, meet the research team and other families, and give blood samples etc. This will be LIFE changing for Connah, and eventually for many families around the world. This treatment would mean my son could potentially speak, walk steadily and even toilet train. PLEASE HELP me to HELP my amazing son CONNAH.
To read more about these beautiful children and the wonderful people pushing to further this research of this mutation please go to:
http://www.jordansguardianangels.org
Alternatively you can find them on Facebook.
Thank you to all who donate and share this to help give my son and other people a better quality of life for the future.
Sincerely
Crystal,
Connah's Mum
This beautiful boy is Connah. Connah was unfortunately misdiagnosed for most of his life. Connah will be 15 at the end of February. Connah is completely non verbal and still in nappies. Even though Connah is generally a happy boy who will hug and kiss everyone he meets, he also can harm himself a lot too. Until the 4th of February 2019, we were told Connah has autism and severely intellectually impaired. But further genetic testing has shown that Connah suffers from an extremely rare mutation on gene PPP2R5D, as well as three other mutations that geneticists are working on but are yet to define. Connah is 1 of only 3 in Australia and 80 world wide to have been dianosed with this condition.
Researchers are hopeful of finding a treatment, and ultimately a cure, for Connah's condition, but until then the mutation has been linked with many conditions, including:
-Alzheimer's
-Autism
-Cancers
-ataxia
-Seizures
And other complications
So the research may not only help Connah but millions around the world by helping find a treatment for other conditions as well. The research for a cure has received funding from the California government. To be part of this ground breaking reseach Connah needs to get to San Francisco on the 28th of March 2019 to help further studies and learn all we can from the Doctors and geneticists.
Here is where I need your HELP. As I've only just got Connahs diagnosis, there is not enough time to get the funds to help get Connah to San Francisco. There is NO research in Australia so it is extremely important to attend the conference, meet the research team and other families, and give blood samples etc. This will be LIFE changing for Connah, and eventually for many families around the world. This treatment would mean my son could potentially speak, walk steadily and even toilet train. PLEASE HELP me to HELP my amazing son CONNAH.
To read more about these beautiful children and the wonderful people pushing to further this research of this mutation please go to:
http://www.jordansguardianangels.org
Alternatively you can find them on Facebook.
Thank you to all who donate and share this to help give my son and other people a better quality of life for the future.
Sincerely
Crystal,
Connah's Mum
Organizer
Crystal Newman
Organizer
Mulbring, NSW