This blog will chart the medical journey of Armand S Hayes, who also plays my son in real life. He was recently diagnosed with GM1 Gangliocidosis (Type II), a rare genetic disorder with no confirmed treatment or cure. In this blog I will try to convey the anticipation, fear, love, and hope that those who are close to Armand feel each step of the way as we attempt to find a cure, or at least stop the progression of this disorder. In February 2011, we left from our home in Ohio to the University of Minnesota to begin steps to take part in a clinical trial that we thought would provide Armand with a stem cell transplant. The rest, well, is being documented for history.
Armand turned 3 in March.
WOW!! You are such a great writer. Your heart is conveyed in this blog…rooting for you!!! Will repost on Facebook for sure ❤
<3<3<3 Thank you for opening up and sharing this on my FB page Looking forward to following you and reading you updates and posts.
I am praying that you’ll find some answers and help for sweet little Armand. “Never give up hope” has become my life’s motto!
Thank you for following us 🙂
god bless you and your family my grandson austin also has gm1 i have tride every thing to help him but i still get the same answer not anoff kids that have this desiase lol thank god.
Sorry for the late response, where is Austin from? The doctors here in Minnesota (we travel from Ohio for treatments) have been able to mostly stabilize him as best as can be expected. I’d be happy to share their contact information with you or with Austin’s parents on getting him in the same treatment program that Armand is in.
Thank you for your wonderful blog. My son Ambrose was recently diagnosed with this condition and it’s very helpful to read about real people coping with it, rather than just the confusing medical jargon.
Armand is such a handsome little boy, and yours sounds like a wonderful, strong and living family.
Thank you for sharing your experiences!
I’m sorry to hear about Ambrose. Have you looked into treatments for him? Does he have Type II? Armand’s been essentially for the most part stabilized over the last year, so we think his treatment is the right step towards managing things.
We are still figuring out a treatment course. Lots of doctors appointments still to come. I would love if you wouldn’t mind emailing me with quick synopsis of Armand’s treatments to date. rob_and_rachel@shaw.ca
Oh and yes, type ii