Read about Jake's Diagnosis
It’s often difficult to put into words how we are feeling and we struggle with understanding what life lessons are meant to be learned through this experience. Most importantly, we have learned that every day matters and we try to enjoy every moment...every kiss, snuggle, and smile!
Loving and caring for our little man Jacob continues to be our number one priority, but as time goes by, we have an urgent need to spread awareness. By raising awareness for NPD, Josh and I feel that we CAN do something to support a cause that is very near and dear to our hearts. With the help of our family, friends and even complete strangers, we can raise awareness for a rare disease that affects the lives of precious young children and the hearts of so many!! It simply is not fair for a child to have to suffer so greatly. We want to share the Joy of Jacob with anyone who will listen. Jacob is meant to make a difference in his lifetime!
This year marks 20 years that the National Niemann-Pick Disease Foundation (NNPDF) has been providing services to families affected by NPD, and raising awareness and funding for research into the causes and treatment of NPD. We first connected with the NNPDF mere days after receiving Jake’s diagnosis and they have been a tremendous support for our family. In fact, they helped connect us with the leading specialist for Niemann-Pick Disease at Mount Sinai in New York, as well as provided us a forum (via Facebook) to reach out to other families affected by this rare disease. We are forever grateful to have access to an organization that is solely dedicated to promoting research for NPD and supporting families affected by this disease. With the help of family and friends, as well as our own personal contributions, we have helped raise more than $1,000 in donations for the NNPDF in the last couple months. Every little bit helps other families affected by this devastating disease and brings us that much closer to a cure.
To learn more about Niemann-Pick Disease visit the National Niemann-Pick Disease Foundation website. Feel free to share this blog post and help us PERSEVERE and raise awareness!
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| We've been told that there won't likely be a cure for NPD in Jacob's lifetime, but that doesn't stop us from trying! |
Perfectly said, Sarah. It brings tears to my eyes each time I read about the struggle for understanding that each of our NPD blogging families (and of course, all families carrying similar burdens)faces on a daily basis. It also brings a smile to my face and joy to my heart to see the courage and grace with which you face those struggles. Please know that all of you - Deanna, Chelsea, Shannon, Lori, Eileen, and Jill to name a few, have made and continue to make such a huge impact. You are right - I had never heard of this disease and now raising awareness and supporting research is a major focus in my family. That is due soley to the generosity of you blogging moms - you have have made your precious babies OUR precious babies and your families OUR families. You are real people to your readers, not just statistics and so we respond as we do to real people - with love and concern. I am honored to play even a small part in helping to wipe this ugly disease out for good.
ReplyDeleteThank you for always being so supportive Cathy. Your words of encouragement mean so much!
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