I met this mom online just a few weeks ago. Her 7-month-old daughter was just diagnosed with neuronopathic Gaucher’s disease. They weren’t sure of which type, type 2 or type 3. They got the results today — type 2.
I haven’t been able to stop thinking about her, her mom, and her two older siblings who are even younger than Ethan and Abigail. They are living my nightmare that I’m praying to avoid, yet many times feel may be inevitable. This just shouldn’t be happening!
Why can’t we get more people to realize how devastating this disease is and work with us to help us find even just a treatment to help slow the disease down! Unlike the “big diseases” who have millions and millions poured into them to find a cure or treatment without success, we haven’t even been given a chance to really look for a treatment.
Without awareness, there is no funding.
Without funding, there is no research.
Without research, our kids die.
Our kids deserve a fighting chance.
This little girl, whom I have never met, rejuvenated my drive to continue to fight after these past two crappy days of feeling beat and defeated. She is just two months younger than Hannah. I’m not giving up on this, I just can’t.
You’re right… you can’t. None of us can. Have you tried writing to talk shows or news shows to help get the word out? Before meeting you and Hannah I had never heard of this disease before and I bet there are millions of people who haven’t. Bringing awareness is key – like you said. Maybe there’s one letter to develop to send to everyone and possibly someone will pick up on it. There’s still hope. I can’t imagine how frustrating this is…
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Hey Carrie,
You’ve done so much yet I can understand your need to continue to fight hard. You are bringing the Gaucher community together with your site and creating more awareness than you probably realize. Hannah is a fighter, just like her mom. Maybe her “Hannah Gauchers” has a longer lifespan and can be helped.
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Carrie,
DON’T GIVE UP!! I know how exhausting this can be, I often have a battle within myself because I want to do so much more but everytime I go to write in the book (I’ll probably be working on until my dying day) or tell my story to Greg on his site of our precious Aaliyah, just typing or telling her story, her journey is so painful still. I can’t find enough strength to keep it going outside of my own head right now. It’s so painful, so awful to have the realization that we lost our daughter. I am NOT at peace with that just yet, I’m still soooo angry/hurt. I WILL fight in Aaliyah’s memory and for all of the children fighting this horrible relentless disease, I just am mentally exhausted and broken,(not depression, just alot of fresh grief). I’m still very nervous about May 18 and getting those results for the babies. It’s all alot to take in at once. Don’t give up, there are so many of us beside you including me, just not as vocal and active as I will be soon….
Hi there.
Hang in there. There is a reason.
Take care
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5 years ago on Feb 9th we lost our little angel Ellie to type 2 Gauchers,we tried everything possible in the hope we could find a cure, contacting Dr’s
all over the world but to no avail.
We began a charity in Ellie’s name ELF(Eleanor Lily Foundation) in the hope nobody else would have to go through what we went through.
At present we are funding a Dr Mia Horowitz from America in the fight to put an end to this terrible disease.
All our hopes are with you.