Little Ethan McKown, you will never be forgotten

I haven’t been able to get Little Ethan out of my mind since he passed away last week from Gaucher’s Disease type 2.   When his dad caught me the morning after he passed and told me what happened, it has felt like a knife in my heart.  I know my husband is feeling the same way, as it has been almost a week, and he is still reeling from the reality and senselessness of his death. 

I have received about a dozen or so emails over the past couple of months asking how he has been doing since his mom posted his story on my blog

His dad and I have chatted quite a bit over the past few months just keeping up on our kids.   The conversations were very open and sometimes brutually honest, especially between Darren (Little Ethan’s dad) and my husband.  I was grateful for their outlet to talk to each other, as my husband needed to reach out to another dad going through this disease.

I keep thinking about what my friend, Nicole, said after she lost her beautiful son, Greyson, to Krabbes disease at 11 months old.  She said that he finally was able to leave his “broken body” and be free to run, play, and soar.   I hope that he and Little Ethan find each other and run, play, and soar together.

I don’t think I have ever had such a reality check as I did with Little Ethan’s death.  We knew him for 7 months or so.  He is the 7th child to die of this disease since Hannah’s diagnosis that I know of.  

I go through periods when I think how different Hannah is going to be and how she is going to be the one to beat this disease.   Hope makes you believe this; the alternative is not an option at this point.  But then I also think back to Nicole’s comment and relating it to “Hannah’s broken body” because of this disease.

Little Ethan, you will always be in my heart.  I know that I will never, ever forget you. 

Be at Peace, Cooper Wilson

I’ve been following Cooper and his family for months now.  Cooper was diagnosed with GM1, another lysosomal storage disease.  He had just turned two a few days earlier.   

“Cooper peacefully earned his wings this afternoon as the three of us sat on the swing outside. We were talking and rocking, and he just decided it was time. We are so thankful that he chose the time and place. It couldn’t have happened that way if we’d planned it… just as it should be.”I have read this dozens of times now, and I just keep thinking to myself…I can’t even allow myself to type the words.  But the peace and tranquility of his passing is something that…if it has to happen… you know…

Be at Peace, Gage Pruitt, beautiful boy…

Gage passed away.   I feel like my heart is being pulled from my chest right now.  He had Wolman’s disease, another lysosomal storage disease like Hannah’s.  His mom and dad fought so hard for him, so damn hard.  Mary, I wish I could just give you a hug right now, be there for you.

Positive thoughts for Gage…

I met this mom a couple of months ago online.   Her son, Gage, suffers from Wolman’s disease, another lysosomal storage disease, that is even more rare than neuronopathic Gaucher’s disease.  

Gage had a stem cell transplant a few months ago, and he had seemed to be doing well.  Unfortunately, he has become very ill, and they received some distressing news after his brain MRI.

Babies are true fighters, and I truly believe in the power of positive thinking.  So please keep little Gage in your thoughts and prayers and give him the extra fight he needs to get through this.

Baby J, you will never be forgotten…

Baby J.  He wasn’t even 7 months old.  I emailed with his mom a few weeks ago shortly after he was diagnosed.  Now he is gone.   He had Gaucher’s type 2.  My heart is breaking for his parents, as it just happened so quickly.

I’ve been sitting here with Hannah leaning against me, watching the Wiggles, thanking whoever would listen that she is still here with me.  Thirty minutes, I have been trying to write this post, and in between my tears for J’s family and for Hannah, I just have a hard time putting my feelings into words. 

Being in the rare disease community, we have seen other children lose their battles and their lives to these diseases.  But this is the first time that I knew that Joseph was alive and fighting, and now he is gone.   Does that make any sense?  I don’t make any sense.

This has completely shaken me, literally.   I’m not naive…I see the progression of this disease in Hannah, and now with J…argh!   I don’t even know what to say.   I can’t seem to think of anything else right now.  I don’t know what to do.

Grey’s Gift — Texas, support a common-sense law!

This is a guest post from Nicole, Greyson’s mom.  Greyson lost his battle with Krabbes disease a few months ago at 11 months old.  His life could have been saved if the state of Texas screened Greyson at birth for Krabbes.  He could have been treated, and he would still be here today if he was!  Greyson’s parents are fighting to get the Texas newborn screening laws changed.  They need our help!

HB 1795 passed unanimously in the House today!

However, Lt. Gov. Dewhurst placed it on the Intent calendar in the Senate due to it’s fiscal note, which now includes CF. He has decided to put it up for debate on the Senate floor tomorrow. Please show your support of SB1720-Greyson’s Law by emailing or calling Lt. Gov. Dewhurst before 11 am.

 You can contact his policy advisor at: