Kane's Fight Against NKH
Donation protected
My grandson, Kane Wyatt was born on September 28, 2017 and diagnosed shortly after with a rare genetic disorder called Non-Ketotic Hyperglycinemia also known as NKH. There is no cure for NKH at this time, however there are doctors working day and night towards finding a cure.
We are beyond blessed that Kane did not present with any major health issues and was stable enough to go home after 12 days of being in the NICU.
Recently, Kane has been suffering with seizures (which is common) but the type of seizures that he is having can not be controlled with medications without keeping him sedated 100% of the time.
After receiving Kane's diagnosis we were introduced to a group on facebook called NKH Crusaders. We were blessed to connect with the founder of NKH Crusaders, Kristen, who is also has a son with NKH. She has been an absolute blessing and such an encourager.
NKH Crusaders will be hosting the 2018 NKH Conference in Boston, MA this coming March 22-23, 2018
We are asking for the donations, to help get Madison, Dalton and Kane to this conference, in order to get Kane in front of 3 of the best doctors in the world that are actively working to find a cure. This will also give us an opportunity to learn more about Kane's conditions, meet other families that are dealing with the same day to day issues that Madison and Dalton are faced with but most importantly, we will have these 3 doctors actively involved in Kane's health care.
The quality of life and life expectancy of a child with NKH is uncertain. We are taking this day by day, minute by minute. We are praying that we have the opportunity to watch this sweet baby boy grow up and live long health life.
If you are unable to donate, we most certainly appreciate the prayers for Kane and his mommy and daddy.
Thank you,
.
We are beyond blessed that Kane did not present with any major health issues and was stable enough to go home after 12 days of being in the NICU.
Recently, Kane has been suffering with seizures (which is common) but the type of seizures that he is having can not be controlled with medications without keeping him sedated 100% of the time.
After receiving Kane's diagnosis we were introduced to a group on facebook called NKH Crusaders. We were blessed to connect with the founder of NKH Crusaders, Kristen, who is also has a son with NKH. She has been an absolute blessing and such an encourager.
NKH Crusaders will be hosting the 2018 NKH Conference in Boston, MA this coming March 22-23, 2018
We are asking for the donations, to help get Madison, Dalton and Kane to this conference, in order to get Kane in front of 3 of the best doctors in the world that are actively working to find a cure. This will also give us an opportunity to learn more about Kane's conditions, meet other families that are dealing with the same day to day issues that Madison and Dalton are faced with but most importantly, we will have these 3 doctors actively involved in Kane's health care.
The quality of life and life expectancy of a child with NKH is uncertain. We are taking this day by day, minute by minute. We are praying that we have the opportunity to watch this sweet baby boy grow up and live long health life.
If you are unable to donate, we most certainly appreciate the prayers for Kane and his mommy and daddy.
Thank you,
.
Organizer
Kari O'Dell Hix
Organizer
Arlington, TX
