Hannah just loves her big brother!
I didn’t end up going to today’s last day of the symposium. After a great sit-down chat with Dr. Goker-Alpan and a very informative lunch with our patient liaison from Genzyme (as well as some quick chats with other researchers), I just felt that I got everything I needed to get during those first two days.
You know, these people are the best in the world when it comes to Gaucher’s disease. I feel very fortunate to be able to be able to approach them personally and get, what I feel is, an honest expectation as to not only the progression of Hannah’s form of the disease but also as to the progress that is being made to understanding the disease and/or any treatments or cures.
Bottom line. There will not be a cure for neuronopathic Gaucher’s disease in Hannah’s lifetime. There likely will not be a cure within my lifetime. There also likely will not be a successful treatment within Hannah’s lifetime as well.
We know that we don’t have much time left with Hannah. We see this disease is progressing, even faster since her 6-week hospitalization this summer. Our only hope at this point is to find experimental options, things to buy us more time with her.
But within that hope, we also have to balance the risks versus possible benefits.
Hannah is still smiling and happy and pain-free. The three things that I have always are our top priority for her. Whatever experimental options we may come across must be safe enough that we don’t put her in any undue severe pain or distress. This disease is cruel enough in its process.
It is hard because as proactive as I am in the Gaucher community and as much ‘activism’ that I have done in the past two years, the bottom line is that it likely will not be enough to get to my final wish – to save Hannah’s life. Bitter pill to swallow, but I will keep trying.
I will never, never, ever give up on her. I can’t. I won’t. She is our baby girl. She is Ethan and Abby’s little sister. I will keep fighting to keep my family together as long as I can.
I know I have said this dozens and dozens of times. But this disease just sucks.
<3 you.
dislike! 🙁
{{{HUGS}}}
What difficult pills we have to swallow with regard to this disease. I know, in order for us to keep going in this fight in this life there are things our minds do to protect us….during my talk with your amazing nurse, she asked if we contacted make a wish yet- I hadn’t considered it and in reality its something I know I should do but it also means I have to face certain inevitabilities, which in my mind I am not ready for. I also am not willing to accept that a cure will not happen in our lifetime. Though it is most likely a fact, I want for no other family and absolutely no other child to suffer through this disease. It melts my heart to see how happy Hannah is and know that God truly has mercy for the children…she is just so sweet and adorable(and if I had been feeling better I would have scooped her up!)…when we were in the restaurant and I walked behind robert-she gave me the sweetest smile when she looked at me! Love her! We have to get louder and make our presence known and honestly Hannah is the PERFECT poster child because literally life just eminates from her! We have to talk soon Carrie because there is so much work to do!