Be at Peace, Niamh Lilly Kay Evans

6 Oct by Mommy

Niamh Lilly Kay EvansSweet, beautiful little Niamh lost her battle with Gaucher’s Disease type 2 last week.    She was only 10 months old.   She fought so hard, for every breath, every day of her life.

I met her a few months ago, soon after she was diagnosed.   I felt a real connection with her mom, as she had the same fight and “out-of-the-box” mentality that I do.  She was always looking to see what was out there to see if there was something that could help her Niamh.   She is an amazing mom.

When I asked her mom if she wanted to share something about Niamh,  “what always stood out about Niamh was how she would smile whenever she was shown affection. That she loved music and got really excited if we sang or danced with her. She loved having a massage and a cuddle. She liked to sleep holding on to either dave or my lip. She loved her brother and he would let her play with his hair. when she was struggleing he would stroke her hair. She had a cheeky grin whenever she was able to taste food…particularly chocolate.”

But now this horrible disease has taken another child away.  It is just so not fair.  This beautiful girl deserved a chance at life.

~ Filed Under: Rare Disease

Little Ethan McKown, you will never be forgotten

10 Sep by Mommy

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. 

~ Filed Under: Gaucher's Disease, Rare Disease

Be at Peace, Cooper Wilson

9 Jul by Mommy

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…

~ Filed Under: Rare Disease

Be at Peace, Gage Pruitt, beautiful boy…

8 Jul by Mommy

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.

~ Filed Under: Rare Disease

Positive thoughts for Gage…

6 Jul by Mommy

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.

http://gagepruitt.blogspot.com

~ Filed Under: Rare Disease
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