Saving Belle & Abby
Belle Andrews is our sweet, kind, smart, beautiful, hilarious and fun-loving 6 year-old daughter. She is also a big sister to our 21 month old daughter, Abigail Mae Andrews.
On Thursday, March 10, 2016, Belle was diagnosed with an extremely rare genetic disease called Niemann-Pick Type C-1 Disease (NPC1). Only 500 children have NPC1 in the world and there only 100 diagnosed cases in the United States. The average life-span of children who go untreated is between 12 and 20 years of age. Most children with NPC1 will die in their mid-teens. As you can imagine, when we were told that she had inherited this horrific genetic disease, we were heart broken and quite frankly, our worst nightmare was realized.
Two weeks later it was confirmed that our daughter Abby also had NPC1.
We want to save our daughters and we need your help to do so.
NPC1 is a genetic disease where harmful amounts of cholesterol accumulate in cells membranes throughout the body, affecting the brain, spleen, liver, among many other things. This accumulation of cholesterol impairs normal brain function and results in neurological degeneration. If left untreated, Belle could suffer from seizures, dementia, ataxia, and cataplexy. Eventually, sufferers of NPC end up in wheelchairs, unable to speak, and unable to recognize their loved ones.
Belle began showing symptoms about three years ago, and for the last three years we have consulted with specialist after specialist after specialist. It was finally recommended that we do the Whole Exome Genetic test by our friend and one of Belle's physical therapists Mary Elizabeth Parker, which we did before Thanksgiving last year. We just got the results back last week.
We have begun the process of putting a treatment plan together and we have a huge mountain to climb to even begin management of this disease for Belle. Physically, emotionally, financially and spiritually this mountain seems unsurmountable at times. However we are committed to doing whatever we need to do to save our precious 6 year old daughter.
The best doctors in the United States treating NPH1, and thus for Belle and Abby, are in Chicago and Washington, DC at the National Institute for Health (NIH). They both are specialists’ in NPHC1 and we will need to visit with them every other week for the next 52 weeks to get a non-FDA-approved drug that is Belle's only hope at slowing the progression of this disease. Because the drug can only be obtained for "compassionate use", the process could take up to five months. The medical costs, coupled with the cost of travel and the amount of work that we will inevitably have to miss will take an exorbitant financial toll on our family. Additionally, Belle will need to be on this medication for the rest of her life. It is our sincere hope that within the years to come this drug will be approved by the FDA and insurance will begin to cover it.
Chris and I are humbly asking all of our friends, and friends of friends for help. We need any kind of support you can offer. Spiritually, emotionally, financially, etc. We will not be able to do this alone and we are desperate to help save our daughter from this dreadful and hideous disease.
Thank you in advance for your kindness, your love and your compassion.
Pam and Chris Andrews
While our journey has been heartbreaking and painful, there have been many blessings along the way. The biggest blessing in our journey thus far is our awe-inspiring village of people that has come together for our family. Over the course of the last year, many people have said to us “you guys are so brave.” We appreciate the compliment, but to be honest; it has been very easy to be brave. Why? Because we believe we can cure this disease. Why do we believe we can cure this disease? Because we have been standing on the shoulders of giants for the past year.
People like Cindy and Michael Parseghian, who started this fight against NPC1 when there was literally no hope. And, after losing 3 of their 4 children to NPC1, they have continued to advocate and fight to HELP us move the dial and find therapies and a cure for this disease. Our fellow NPC1 parents, whom we have come to love so much; a community that rallied to our aid, all of whom have embraced us with a hug and said “it will be ok.” Many have flown to Austin, to meet the girls. All of these families have become part of our family.
We are thankful for institutions like the NIH and Rush University Medical Center who have embraced us, along with their wonderful team led by Drs. Elizabeth Berry-Kravis and Denny Porter. Our local physicians and therapists, including Dr. Amy White and Dr. Mary Elizabeth Parker, who have given us so much help and hope, always encouraging us to follow our intuition and have, without a doubt, saved our girls from years of unnecessary neurodegeneration.
Our beloved local hospital, Seton Healthcare Family and Dell Children’s Medical Center (DCMC) who have stepped up and lived up to their motto of treating the most vulnerable. We are grateful for the many doctors at DCMC, who under no obligation, have committed themselves to a complex clinical trial for these children, simply because they saw a need.
And of course, The University of Texas Dell Seton Medical School, which is committed to walking “hand-in-hand” and in partnership with us as we aggressively work to find a cure for this disease.
Words cannot express the gratitude we have for
VTesse led by Dr. Ben Machilse. When most people hear of a horrible disease, they assume that there is some company out there working on it. That’s not the case. This is especially true in the rare disease world. We thank our lucky stars every day for VTesse and all of the people on Dr. Machilse’s team.
Our many friends, who have stood by our sides from that first dark day. They came running to help us and they never left. Many have put their own lives on hold to save ours. They have dropped everything to go to Chicago with us. To hold the girls’ hands. To be there. To let us know we are not alone.
Our Family -- our brothers, sisters, aunts, uncles and extended families that have given us unending support and love and of course, our parents… There are no words to describe the support we have received from our parents.
There are too many people to mention and not enough time. But, to us, they are heros. All of them. All of you.
So, why are we so Brave? It is easy to be brave when you are surrounded by heros.
We can cure this disease. We WILL cure this disease. That is what we believe. That is why we created the Firefly Fund. And that is what the Firefly Fund believes and that is what it stands for. This is our tribe. You are our village.
We can’t do this alone. We need each and every one of you. We need your friends and their friends and their friends. And just to be clear, this is not plea for sympathy. This is a call to action. The cure for this horrid disease is within arms-reach. These children, not just our Belle and Abby, but all over the world are counting on us. They are counting on you.
Belle and Abby are now receiving treatment in our hometown of Austin, TX at Dell Children’s Medical Center. These two little girls have been an immense blessing to our lives and we will continue to fight for them, and all of these precious children, until more therapies and a cure for NPC1 is found. We are “all in.”
From the deepest place in our hearts, thank you for the support you have shown our family over the last year. Please continue with your generosity, your love, your support and your prayers. We have come a long way in a short amount of time. But the truth is, we have a very long road ahead of us.
If you haven’t seen People Magazine’s documentary that features our family’s journey with NPC1 this year, you can view it here, www.people.com/andrewsfamily
If you would like to keep up with the Firefly Fund and the amazing things we have planned for these precious children, please visit us often at www.firefly.fund
With love, HOPE and gratitude,
Pam & Chris Andrews
To learn more about the event, visit the newly launched Firefly Fund website at www.firefly.fund!
For more information on sponsorship opportunities contact email@example.com or 512-465-2162.
Tickets & sponsorships can be purchased on Eventbrite - https://www.eventbrite.com/e/firefly-fund-inaugural-event-tickets-30337161266
Our mission is to fund and support the research and education necessary to accelerate a cure for rare and fatal neurodegenerative genetic diseases that affect children.
Tuesday, February 28, 2017 6:00 - 8:00 pm
3TEN Austin City Limits Live
10 W Willie Nelson Blvd #1a | Austin, TX
With special guest Dan Rather
For sponsorship information contact firstname.lastname@example.org or 512-465-2162
Tickets & sponsorships can be purchased on Eventbrite - https://www.eventbrite.com/e/firefly-fund-inaugural-event-tickets-30337161266
Belle and Abby’s mother, Pam Andrews, is my sister. We are only 22 months apart and I have never known life without her. My sister and I have chosen similar paths our entire lives – with her by my side, I feel as if could do anything. We live just miles apart in Austin, got married and had children around the same time. Pam has two girls and I have two boys, it all felt perfect. Ready set go… let’s watch them grow! One of our biggest blessings as sisters has been walking through motherhood together. We love each other’s children as our own as “Pam Pam and CoCo”- Belle named me and Henry named Pam. The children have a blast together.
This past year has changed the original plan. Our normal has shifted - we were supposed to go right and now we’re going left. It was supposed to be straight and now it’s crooked. It has been a scary, hard, incredible, and amazing journey all at the same time.
Belle and Abby are sisters and Belle is the older sister. Abby has never known life without Belle. They are paving their paths together and it’s a beautiful thing to watch. Abby will always know she can do anything with Belle by her side. I know, because I learned from the best - my older sister, Pam.
This holiday season hold your families tight and keep paving your paths together. Your path may not go in the direction you planned but you can do anything with your loved ones by your side. I hope you will consider making a donation to Saving Belle and Abby at www.gofundme.com/savingbelle. Thank you for your generosity. To keep up with Belle and Abby’s journey, follow them on Facebook at www.facebook.com/savingbelleandabby.
From our family to yours,
Hi Pam. Thank you so much for these updates. I think about you and Chris, your girls and your mom so often. I have commented to others on the irony that the work you did as the committee clerk for the House Committee on Public Health was largely responsible for the CHIP legislation that got passed, making health insurance available to more than 600,000 Texas children. only to now have your own children face such a catastrophic need. I just want you to know that I keep you close in my heart with love, and I offer daily prayers for your strength and comfort.
Hello - I am Bea Ann Smith's daughter-in-law and wanted to pass along some information to you, having previously worked for Southwest Airlines. (You may already be aware of this program - and others like it - but just in case.) Southwest Airlines partners with RUSH via a Medical Transportation Grant Program. They provide a certain number of complimentary tickets to the hospitals with whom they partner, who then delegate the tickets, as they see fit. Worth looking into, considering the degree to which your family will need to travel. If you have any questions, do let me know. I am happy to help you find answers. https://www.southwest.com/html/southwest-difference/community-involvement/charities/medical_transportation.html#il You have beautiful, beautiful girls. Warmest Regards, Beth Anne Smith
You and your husband and those amazing girls of yours are so, so incredible. Thank you so much for continuing to share your story. What a great point, hoping this field is tackled at the new medical school. I would definitely join any effort to make that happen.
Prayers up for these sweet baby girls and to you all as we are praying for the best results and answers in this journey! We will support in any way we can but first and foremost know we love you and think about you all the time. XO and Holla Holla-Meals
Praying for these sweet babies! I have mini strokes daily and have been reading about the use of hemp oil to help the brain continue to function as normally as possible for as long as possible even for Alzheimer patients. Not sure you are interested in the Charlotte's Web (doesn't have as much THC) hemp oil but reading about it wouldn't hurt.
This is the prayer for today in the Divine Mercy novena. I'm praying it over and over for your precious girls.: Here are the prayers for today: Day 6 - The Divine Mercy Novena (Audio/Video Version) "Today bring to Me THE MEEK AND HUMBLE SOULS AND THE SOULS OF LITTLE CHILDREN, and immerse them in My mercy. These souls most closely resemble My Heart. They strengthened Me during My bitter agony. I saw them as earthly Angels, who will keep vigil at My altars. I pour out upon them whole torrents of grace. Only the humble soul is capable of receiving My grace. I favor humble souls with My confidence." Most Merciful Jesus, You yourself have said, "Learn from Me for I am meek and humble of heart." Receive into the abode of Your Most Compassionate Heart all meek and humble souls and the souls of little children. These souls send all heaven into ecstasy and they are the heavenly Father's favorites. They are a sweet-smelling bouquet before the throne of God; God Himself takes delight in their fragrance. These souls have a permanent abode in Your Most Compassionate Heart, O Jesus, and they unceasingly sing out a hymn of love and mercy. Eternal Father, turn Your merciful gaze upon meek souls, upon humble souls, and upon little children who are enfolded in the abode which is the Most Compassionate Heart of Jesus. These souls bear the closest resemblance to Your Son. Their fragrance rises from the earth and reaches Your very throne. Father of mercy and of all goodness, I beg You by the love You bear these souls and by the delight You take in them: Bless the whole world, that all souls together may sing out the praises of Your mercy for endless ages. Amen.
Good evening. My name is LINDSEY and I own Love Song . Your family has been nominated 14 times for our help. If you are not aware of what I do I will attach some information. Please contact me with any questions. We would love to help your family! Www.facebook.com/lovesongeventsandphotography Our Mission: Impacting lives and raising awareness worldwide through the lens of love. Lindsey prides herself on taking people through a journey with her photography and video diaries. Journeys that allow her clients, their loved ones and the public to remember the smallest details long after the memories fade. The Love Song Foundation is an organization that truly makes an impact in the lives of our clients. Love Song captures priceless moments through the art of photography and storytelling. Documenting many controversial and highly emotional stories and topics makes Love Song unique. We raise awareness by documenting all aspects of life...The good times, the bad times and everything in between. Lindsey and the stories of her clients have been featured in Forbes, CNN, People Magazine, Huffington Post, Yahoo News, The Daily Mail and many, many more. Lindsey's social media following is among the highest for any photographer on Facebook with videos viewed by millions...Bringing awareness and support to causes such as: ALS, childhood and adult cancers, stillbirths, Alzheimer's and numerous others. Love Song caters to the individual and specific needs of each client...No two clients are the same. Love Song is global and has featured stories from around the world. We don’t view our client as just another documentation. We focus on creating personal and lasting relationships. We go above and beyond by documenting a little something extra, granting of wishes, recording a heartbeat or taking a video during someone’s last breath. Love Song...Putting our heart and soul into everything that we do because that is what our clients deserve...Love Song...The Difference. Our goal is to capture significant periods in the lives of our clients. Oftentimes we are meeting clients for the very first time during their most trying or darkest hours- whether it be photographing a still birth, featuring an amazing journey, or capturing someone’s final moments here on earth. We don’t just photograph our clients...We share their stories. We give others a glimpse into our client’s lives when we share their most sacred moments. Love Song assists clients by helping to coordinate fundraising through awareness. From July of 2014 to September 2016 Love Song raised $611,000 for families in need by sharing their stories through social media. Those numbers have continued to rise daily. Often, our stories are featured in the news, through local media and even internationally. “Our client relationship does not stop with a photo shoot, we walk along with them on their journey because it becomes personal. We do our best to grant wishes, put on memorable events, and even help making Christmases and weddings special. In November of 2014 Love Song was able to donate an $86,000 wedding to one of our clients with terminal cancer" Please message us via facebook if you are interested.
So sorry to hear that you are facing this terrible challenge. Best of luck for your family and I sincerely hope the treatment is successful. They are beautiful girls.
Pam not sure by what Connection in our circle brought this to me but grateful it was My prayers will be counted among the many others offered for your family Pam Ross
My prayers and thoughts have been with you since day one may God give you his strenght
Thank you so much for your continued updates! We have yet to meet, but your girls have found their way into my dreams (I dreamt that I picked them up from the airport and drove them to your home, LOL! That's what happens when I read updates before going to sleep...). I do think about your family's fight so often, and am so happy to read that your amazing girls are getting such good care, and will continue to hope (and help make it happen if at all possible??) that the treatments will one day happen in Austin! We are friends of Heather, Darren and Harper, please do let us know if there's anything we can do for y'all, they know how to find us!
Casey and I were devastated to learn of Belle's diagnosis. You are in our hearts and prayers.
Keeping Belle and you all in my prayers ...