February 2015, we welcomed Charles, our third child into our family. All seemed well until six to eight months of age. Many of you know Amelia's story. From our time with Amelia, we were hypersensitive to milestones and started to be concerned Charles was not meeting his early ones. After a few questions with the pediatrician, we were referred to a specialist, a neurologist. Finally, in Jan 2016, we had a follow up appointment for a diagnosis.
We made our trek to Phoenix Children's. Our life was about to change in a way we could not predict, foresee or would ever have thought. Our diagnosis...a genetic disease known as Krabbe Disease. The disease is progressive and degenerative, and there is no treatment option. The worst news is life expectancy is 2 years of age. Krabbes is caused by a recessive gene donated by both parents that causes an enzyme deficiency that prevents cells from processing something in the cell that, if allowed to build up, becomes toxic. The rarity of this disease is less than 1 out of 150,000.
Our eldest son, Wesley, is slowly starting to communicate verbally. He is not quite able to use full words, and all he is able to get out for Charles is "Chi"...hence the title of our blog. Over the coming months we will share thoughts, pictures and memories we have of our "Life With Chi".
We ask for your prayers for our family as we travel this difficult road with Charles.
Blessings
Amelia, Wesley, Brian and Kimberly...and Charles
Kimberly,
ReplyDeleteI am so sorry to read this. Please let me know if you would ever like to talk. And in the meantime I am here and praying for you. :)
Michelle Clifford