We are on our way to Nashville! The National Niemann-Pick Disease Foundation is holding its annual medical and family support conference in the music city!
Last year, Kaitlyn was the only NPA child in attendance. I feel that it was our responsibility to put a face with the disease and be her voice.
This year is bittersweet going without her. I have been praying that I will have the right words to be able to best help other families and be able to focus on impact rather than loss.
I will try to post more during our trip on the status of Enzyme Replacement Therapy (ERT) and other advancements in research.
Safe travels to everyone traveling to the conference. There are many coming from all around the globe!
Last year, Kaitlyn was the only NPA child in attendance. I feel that it was our responsibility to put a face with the disease and be her voice.
This year is bittersweet going without her. I have been praying that I will have the right words to be able to best help other families and be able to focus on impact rather than loss.
I will try to post more during our trip on the status of Enzyme Replacement Therapy (ERT) and other advancements in research.
Safe travels to everyone traveling to the conference. There are many coming from all around the globe!
Deanna - How awesome that you continue to be a voice for all NPA children and their families. You introduced your blog followers to "our" family of NPA babies, made us aware of a killer that most of us had never heard of and gave us the gift of the precious lessons these angels taught and continue to teach us each day. Thank you for continuing to post - the love and prayers of so many continue to come your way. I so hope you go forward with your book plan! Anxious to get your updates from the conference!
ReplyDeleteI agree 100% with Cathy above!!! I look forward to the book too. You and Kaitlyn have brought the light to our eyes on this and I am now doing what I can to make people aware of NPD. I wish I can actually go. I would love to meet Deanna and the family one day.
ReplyDeletePenny
Safe travels. I think that what you are doing is an amazing and selfless thing. What a way to honor Kaitlyn!
ReplyDeleteI thank God from the bottom of my heart that Kaitlyn has a wonderful family.You now are Kaitlyn's voice and I can see a certain angel smiling down on you.I received a message from the U of Mich, and they are continuing research on this NPD.
ReplyDeleteMay Kaitlyn's love and light shine down on you,as she does for me.
Sending love and hugs,
Kaitlyn's Wen
P.S.When I am feeling overwhelmed, I go to Kaitlyn's place.I feel her love and see her light in my life daily.