On Thursday, I was invited by the Patient Advocacy team at Genzyme to share Hannah’s story with all of their case managers and patient liaison representatives. I was incredibly honored that they felt so strongly that more recognition and differentiation needs to be made for families with children with Gaucher’s type 2 and type 3 versus those families with dealing with type 1. From what I understand, this was the first time that Genzyme took a direct approach to really understanding the needs of our families and allowed someone to share like this.
I talked for about 30 minutes with the help of a power point presentation I had put together. I shared Hannah’s story, what life is like with a type 2/3 child, and shared lots of pictures so they could see that Hannah is a real person, not just words on my lips.
Even more important to me was the ability to be able to share what information I felt was important that these people, who are in direct contact with other families dealing with type 2 and type 3, share the resources available to our families. I discussed the NIH, Dr. Goker-Alpan and Dr. Schiffmann, Medicaid Waiver programs, our Yahoo email family-only mailing list, and even talked about the Make-A-Wish program.
It really meant so much to me to be able to enlighten these important people on how to help future and current type 2/3 families. I felt like it was something that could really make a difference in the lives of families of the newly diagnosed so they don’t feel so lost. I want these families to know that there is family support out there, medical support out there, and even financial support out there.
I was very full of pride after this webinar was over. I felt it was just one more step to using Hannah’s fight to make a real difference, something that would likely not have been done at this time if it wasn’t for Hannah being here today.
Hannah is an amazing ambassador. She really is. She is inspiring, intoxicating, and captures hearts in a way that is rarely ever seen.
Best of all, she is mine 🙂
You are an AMAZING woman. Words are not even enough! Hannah is a blessed little girl to have you fighting for her and the others with type 2/3.
Way to go Carrie! You are Hannah’s best and brightest advocate and teaching others will be so fulfilling for you!!
Carrie, I continue to be impressed wtih the work you do! Hannah is one lucky girl.
Hannah is as amazing as her mom!
You are just an amazing person, advocate and most of all a wonderful mother. Hannah is one lucky little girl to have you as a mother!