I’ve been a little silent on here lately due to a tragedy that I would never wish on any family… our oldest son Kason was diagnosed when he was just a few months old of a really rare gene mutation called CASK Gene Mutation. It has many different effects including epilepsy, cerebellum not fully developed, low muscle tone and many more symptoms. He was also diagnosed as legally blind due to his optic nerves never developed and attached to his retinas and also was non-verbal due to this mutation. Regardless of all the challenges he was born with he was a huge light in our world and our first born son. We loved him with all of our hearts and did everything we could for him no matter what the cost. He was the happiest kid ever and the strongest I’ve even known going through everything he faced. They told us early on that there was high possibility of early death as he was on the severe end of the spectrum and there is no cure but we always prayed for a miracle and he surpassed many expectations of what doctors could ever try to throw out there.
Sadly on January 31st of this year he stopped breathing and lost his pulse causing him to go into a deep coma doctors think very likely from a severe seizure. He spent several days in the hospital but after many tests damage was determined to be to severe for his already under developed brain and he was declared medically passed on February 4th at 7 yrs old… Our lives have been changed forever and the heartbreak is devastating… I made this video of his Honor Walk on his last day with us as we donated his organs to try and help save another family from having to go through this type of pain…
The reasoning for the crowns is due to this verse;
Blessed is the man who remains steadfast under trial, for when he has stood the test he will receive the crown of life, which God has promised to those who love him. James 1:12
Probably won’t be posting much for a while as our family is grieving but I will pick back back up eventually just need some time away from it all for a bit.
**I do not own the rights to this song**
If you would like to help find a cure for CASK you can go to the link below to donate to help fund research. Thank you.
www.caskgene.org/about-cask/d...