This beautiful sweet face is Olivia.  She was diagnosed with Gaucher’s Disease type 2.  I have talked about her any times on here (including my last post, I believe).   She and Hannah have so many similarities, both in presentation of symptoms and, well, they just look very much alike!  I call Olivia Hannah’s “soul sister.”   She has totally captured my heart. 

She recently spent her first birthday in the hospital getting a trach.  If she did not get the trach, she likely would not be with us today.  

This disease is so horrible.  I could share more about Olivia and her mom’s fight for her, but with her mom’s permission, I will let her mom, Melissa, tell you herself. 

Over the past few months I’ve been posting positive thoughts, pictures of Olivia peaceful and smiling- and all of that is True… only its not all the time. I know that most of you understand the complicated reality that is Olivia’s life.

Recently I’ve found myself reaching again, attempting to make one more “Hail Mary Pass,” calling scientists at my job- maybe they might have something for me, and hopeful that there will be a miracle… maybe there will be. I have my mom setting up a Novena to Terrence Cardinal Cook- many of you have been praying for his intercession already… but I think perhaps a more organized attempt might work. I will let all of you know when/where that will be- if you are not Catholic and do not believe in organized prayer or intercessions- I ask that you just pray during the same time as the novena for a complete healing of Olivia and a cure for Gauchers.

Reality though, if there is not a miracle Olivia’s life will be cut much shorter than any of us had expected. Every day now I am hit with something- albeit a drop in O2 sats, a blue face out of nowhere, a fever, hand and leg tremors, spastic episodes. For those of you that may not understand what I mean by spastic episodes I will explain.

As a result of Olivia’s central issues, her brainstem is not functioning and is triggering episodes where her body completely tenses up (think charlie horse all over) causing her back to arch, and all of her extremeties to become so rigid she can’t control movement at all, also causing her larynx to completely tighten shut- a laryngospasm- preventing her from breathing. Now that she has had a tracheostomy- the laryngospasm no longer causes a breathing issue- but you can tell she still has them.

We have her on a medication that will relax her but in the last two days its not working… last night she had these spastic episodes every few minutes or so until she finally was able to fall asleep. (About two hours) During these episodes, she cries silently, because of her trache she can’t produce sounds yet. Tears fall down her cheeks- and holding her only comforts her briefly… there is no medication, no bath, no song, no book, no hug that will make these go away.

My fears are that sooner than later Olivia will begin to have respiratory issues. Just recently she has not been able to hold her saturation while she is sleeping- no matter how much O2 we give her. She seemed ok after she had been nebulized with Albuterol- but the worry is there. Her condition also threatens her ability to breathe… as the disease progresses the brain will stop telling Olivia to take in a breath… central apnea. My nurses have noted irregular breathing patterns while she sleeps- but she has had that for some time now.

I’ve been sad lately, my mind consumed by Olivia and trying to create awareness…but as I’ve learned over the years- and especially from Olivia… Smile- Always!

I know that this may be hard for some of you- but I wanted everyone to understand that Olivia, and babies/children with Gauchers, MPS, Pompe, MS, Cystic Fibrosis… all chronic diseases suffer more than most of us that are healthy could even fathom. There is no 6 mos protocol with a 99% cure rate at the end… there is no cure, these children are sick, and they are suffering.

But through it all- if we learn anything, although they are suffering they still know to laugh, play, sing, dance, and love. Live your life to its fullest, be grateful for what you have, count your blessings, and appreciate your friends and your loved ones.

Hannah and I love you, Little Miss Olivia.

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.