That is how I would describe my incomparably beautiful daughters, Belle and Abby. They are both brave and strong and kind and trusting and warm and gentle yet fierce. They ebb and flow through each day open to opportunities and challenges without fear and without complaint and with a smile on their face and laughter in their voice, always anticipating and looking forward to what’s next. My daughters continue to inspire and amaze me as they create their OWN PATH of LIVING life with NPC.
It’s been a while since I’ve made the time to update our wonderful community – our tribe, as my husband likes to call all of YOU. We’ve been busy with school. Busy with treatment at Dell Children’s Medical Center. Busy with Belle’s 7 different therapies every week. Busy with the NPC community and SOAR. Busy with work. Very busy with the foundation, The Firefly Fund. Belle and Abby stay busy living their lives, pushing themselves beyond their physical and various other medical challenges. They are deeply in love with their school and the community that they have built and that lovingly surrounds them at school every day. A place where Belle has been since she was 18 months old. And, with all of the business, Chris and I also stay busy just watching and enjoying them live their life to their fullest. Absorbing and relishing in the joy and purity that each of them bring to our lives. Each. And. Every. Second. Living and breathing in the here and now. Isn’t that all any of us have? The here and the now.
Don’t get me wrong. There are many times throughout each day where I feel like the air I breathe has teeny tiny shards of broken glass in it. There are times when I think about the enormity of what we are facing and my heart stops. There are times I am paralyzed with the disbelief that this is happening to my precious daughters… to my family. There are many times that I wake up in the middle of the night thinking about the expense of caring for two little girls with a progressive neurodegenerative disease and I can’t sleep. There is pain in watching Belle struggle to walk, to talk, to eat and to be one with her community. There is fear of whether or not Abby will have these same struggles.
We WILL cure this disease. Not just for Belle and Abby, but for each and every innocent life that has been afflicted by such a horrific condition.
When we are out and about and run in to people we know we are usually asked the same three questions.
1. How are the girls doing?
2. Is the medicine working?
3. How are things going with the foundation?
I can tell you that the girls are doing pretty well, all things considered. They are happy and Chris and I work hard to keep a tight circle of people around them that love and support them unconditionally and without judgment. Belle is struggling to walk. She has a full time aide at school that helps keep her safe from falling. And boy has she become buddies with her aide, Corrine. Abby is asymptomatic for the most part. She is a feisty 3 ½ year old and blazes through each day and is Belle’s biggest fan. Abby loves balls, trucks, trains, dinosaurs and anything she can build with her hands. She loves to hold Belle’s hand when they are walking and she loves to tell Belle “take a deep breath and count to five” when Belle gets frustrated with a task that is difficult for her.
When people ask me if the medicine is working I usually stumble around trying to answer… Belle was much more progressed when she started receiving the VTS-270 than Abby was. So you can’t compare the two, really. I definitely feel as if Belle is stable and we haven’t seen any progression of the disease in Abby. But I want to be clear. The medicine is slowing the progression. It is not a cure. Which leads me to the foundation that was inspired by Belle and Abby’s diagnosis.
The Firefly Fund has become our third child. As with our children, Chris and I pour our hearts and soul in to its success. I’m happy to report that we’ve just launched a drug development campaign called Join the Flight, which you may have seen on social media. – Facebook, Instagram, Twitter and You Tube and here on our website. Please join us and JOIN THE FLIGHT! Our goal with this campaign is for every person in our community to donate $10, $20, or $30 dollars a month to The Firefly Fund. Really, what we want is for you to come up with an amount that is invisible to your monthly expenses. I promise you that while it might be invisible to you, it could save the lives of these precious children through the drug development work the foundation is doing.
You are also welcome to e-mail or call us directly if you want to learn more about the various therapies we are funding through the foundation. We are also working tirelessly and in collaboration with many stakeholders to create a path forward for newborn screening for future children born with NPC.
During this holiday season Chris and I hope that you will hold your loved one very close and enjoy being in the here and now.
Thank you for continuing to reach out to us. We remember and hold dear each and every message of love and support. We’ve added a blog here on the site so I can post updates about how Belle & Abby are doing. If you haven’t already, be sure to sign up for updates from the Firefly Fund.
From our family to yours, we hope you have a tremendous and memorable holiday season with your family and friends.
With Love and Gratitude,
Pam & Chris Andrews
Proud parents of Belle & Abby Andrews