Abby's Inspiring Journey
Abigail Alvey's journey is a poignant narrative of courage, determination, and the unwavering spirit to defy the odds.
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Abby is a warrior with a brave heart. She and her family live with strength, grace, and unwavering hope in the fight against Niemann-Pick Disease Type C. Joins us and be #abbystrong!
Children across the world have been suffering without treatments approved or cures being developed for terminal dementia for ages. It's incredible almost no one knows about the over 100 rare diseases that lead to childhood dementia and death in over 700,000 children worldwide.
There are very unique challenges that face the NPC and rare disease communities. Challenges that YOU can help with.
We believe that, through education and advocacy for treatment approval, parents will be told their child has a chronic but manageable disease called NPC, and here's what you need to do.
We believe that awareness is key and that our goal should be to join forces together and focus on building a massive and sustained social media presence that will be too hard to be ignored. Please see our socials below and like, follow, and share our content. Invite others to do the same!
Abigail Alvey went through an emotional rollercoaster of a diagnostic journey that is all too common for children diagnosed with Niemann-Pick Type C. At just 2 weeks she scared her parents with bruising all over her body. Doctors quickly worked through to determine what was the cause and she was hospitalized for weeks. She almost went through a life risking surgery for a inaccurate diagnosis of a disorder called Biliary Atresia. Her family decided to take her to a hospital that had an appropriate specialist at Children's Hospital of Philadelphia (CHOP). Abigail spent months going through intensive testing and traveling back and forth from hospitals to home only to determine that she was "fine" and the problem with her liver had resolved with only minimal scaring and a swollen spleen.
She would go home with some medication and a central line for a little while, but otherwise started growing and developing like normal for the first two years of her life. Everyone thought how lucky she was to have avoided such a terrible diagnosis.
It wouldn't be until she was 2 that we started noticing a worsening mass in her abdomen which was her spleen enlarging more. Health professionals would continue to dismiss our concerns.
We eventually went to see hemonc and genetics and they too couldn't figure out if there was a problem. They even ran a test that tested for similar disesase but excluded NPC.They offered a whole exome test, but advised it would cost thousands.
Another year would pass before we started to notice weakness, shaking, more falls, worsening speech, and cognitive delays.
After she would start to show signs of collapsing when excited (Ataxia) we said enough was enough to the medical gaslighting and decided to take Abby back to CHOP. They had her seen by someone new. A world-renowned expert in his field Dr. Can Ficicioglu, MD, PhD, is Director of the Newborn Metabolic Screening Program and the Lysosomal Storage Diseases Program. After reviewing her history and then seeing us right before her 4th birthday we received the worst birthday gift you can imagine. He took seconds to look at her and tell us she had Niemann-Pick Disease. We returned to Virginia devastated and awaited the confirmation. Abby would be confirmed to have NPC and we were told to go make memories as there is no cure or approved treatments.
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Connect with us on our social media platforms, listed below, and help spread the word by liking, following, and sharing our content.
Invite others to join us in this critical cause!
HOW TO REACH US
If you have any questions, would like to get involved, or simply want to connect, here's how you can reach us:
Email Address
abbyfightsnpc@gmail.com
Phone Number
+1 804 366 6149
Website Contact Form
https://brand.site/abbystrongfightsnpc/contact-us
Donate to #AbbyStrong
Your contribution can make a significant impact in the fight against Niemann-Pick Disease Type C and support children like Abby in their journey towards a brighter future. By clicking the link below, you can make a donation to #AbbyStrong, helping us fund research, raise awareness, and provide crucial support to families affected by this rare disease.
JOIN THE #AbbyStrong COMMUNITY
Stay tuned for upcoming events and collaborations. If you have ideas for partnerships, events, or initiatives, reach out to us via email or social media, and let's work together to make a positive impact.
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