The Langa Family Big WOW 2021
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The Langa Family Big WOW 2021

Thank you for visiting our Langa Family Big WOW page!!  To our new supporters, hello (!!) and please read our story (further below) about how Wilson's Disease (WD) has greatly impacted our lives over the last 11 years.  To our supporters and attendees of previous years’ Big WOWs (hello to you, too!!), this is the LAST YEAR that the national committee will be having a Big WOW. As such, if you’ve come to our previous years walks, we’d absolutely love to see you again to support WD awareness. Details for the walk are below:

 

The Langa Family with the help of the Friends of the Dahlgren Railroad Heritage Trail (DRHT) will have a walk on the Dahlgren Railroad Heritage Trail located at 10431 Bloomsbury Road in King George, Virginia to raise awareness for Wilson’s Disease.  (For more information on the DRHT, please visit www.dahlgrentrail.org).  The walk will be held on Saturday, September, 25th, 2021 from 11:00 a.m. to 1:00 p.m.  If you have attended previous years, please wear your favorite color Big WOW shirt from a previous year. If you haven’t attended a previous year, no problem. Just be comfortable. Unfortunately, we don’t have any new shirts for this year. Please remember to bring and WEAR YOUR MASK. We will also keep social distancing as a priority.  No restroom facilities will be available at the trail.  Donations will not be accepted in person at the walk.  All donations towards Wilson's Disease should be made via this page.  We appreciate your assistance in this as we all do our part not to spread COVID-19. 

 

Please click the donate button (to the right) to donate and support the fight against Wilson's Disease.  All funding will go towards the WD Patient Registry.  "The Patient Registry creates a framework for advances in diagnosis, treatment and potential cures for the disease.  Not only will the current generation of Wilson's Disease patients benefit , but this registry will serve as a roadmap for future generations to come."  Please visit www.wilsonsdisease.org for more information.   Please note that we will be accepting donations throughout the months of August through October.  The donations link will be deactivated at 11:59p.m. on 10/31/2021. 

 

OUR STORY:

For the past 11 years, Constantin Langa (now 38 years old) has been struggling with Wilson Disease (WD).  Constantin's symptoms started when his son Traian was only 3 months old, and his wife, Nichole, and him were just learning how to be new parents. 


Some of Constantin's first symptoms included excess saliva, toe and hand cramps, tongue and body tremors, dystonia, slurred speech, and balance loss (most all of which, he still struggles with today). It took him and his family 6 months from the start of his serious symptoms to get a diagnosis. By many measures though, they consider themselves very fortunate to have gotten a diagnosis within that timeframe, especially when others in the WD community were wrongly diagnosed or it took even longer for them to get a diagnosis. It was a very traumatic period for his family, as Constantin, a healthy and successful man, was falling apart, and his wife was taking care of a new baby.  That “baby” (Traian) is now 11 years old, and Constantin and his wife were blessed with the birth of their second child (eight years later), a beautiful healthy girl named Adina, who is now 3 years old.                                                                     


Part of the reason Constantin is a survivor is because he was diagnosed “early” enough  to catch the fatal onset of the disease (although genetic testing at birth would have been the most ideal solution). However, getting a diagnosis was no easy matter. His family ran from doctor to doctor, and every time the doctors were either baffled, told them what Constantin didn’t have, or they were provided a wrong diagnosis. The first diagnosis they received was anxiety and depression, but they never gave up searching for answers because that just didn’t seem correct. His family knew that there was something more going on. It wasn't until he took an MRI, and the neurologist saw the "panda face" that Constantin was finally on the path toward a diagnosis. The MRI, plus lab and genetic testing, and the discovery of Kayser-Fleischer Rings in his eyes solidified the diagnosis. Thanks to a doctor at Johns Hopkins and assistance from a WD Center of Excellence doctor at Yale, they had an answer.

 

Over this period of about 6 to 8 months, the neurological manifestations of WD took Constantin suddenly from a very healthy, active lifestyle and holding a full-time job in Washington, D.C. to completely debilitating neurological effects of not being able to perform any basic function without assistance. Constantin's symptoms greatly worsened 3 weeks following the start of the chelation therapy medication. The doctors tried to save his liver by getting as much copper out of his body as quickly as possible. As a result, his neurological system was compromised. 

 

Eleven years into this WD journey, daily life is still a struggle and Constantin still requires 24-hour assistance from caregivers and family.  However, his determination to get better means that even though he can't attend the regular therapies (aquatic, modified yoga, neurofeedback, acupuncture, acupressure, speech, etc.) he used to prior to COVID-19 (which has resulted in additional neurological challenges for him) he continues to push and try to overcome. Even these many years later, they are defying the odds and continue to see improvements.

 

Our hope is to raise awareness for WD, so that we can prevent future generations from the same devastating situation. Early diagnosis and treatment is the key!  Thank you for supporting us and the WD community as we work together to better the lives of our fellow human beings!! Stay safe out there. 
 

With Love, The Langa Family

ABOUT 2021 Big Wow

All donations are used to fund the Patient Registry Research Project for Wilson Disease.  The Wilson Disease Association is a 501 c (c) organization in the United States.  

Supporters
Name Date Amount Comments
Jim P. Lynch 10/07/2021 $25.00 Thanks for everything the Langa Family does!
Constantine and Nichole Langa 10/03/2021 $200.00 This donation is made on behalf of all the Big WOW attendees who donated cash to our lemonade stand during the day of the walk.
Anonymous Friend 09/29/2021 $225.00  
Constantine and Nichole Langa 09/27/2021 $200.00 Thank you all those who have donated and joined us Saturday at the Big WOW. Your support will help fund the Patient Registry and make a big impact on early detection, diagnosis, and treatment for future generations.
Andrei Sauciuc 09/25/2021 $200.00 It’s sad to see this meaningful event ending. We may just leave it in God’s hands. Loads of love, hugs and prayers towards Langa’s Family and all others affected. We’re happy we got to be part of this!❤️?
JON FRIEDRICH 09/25/2021 $50.00 We love you all!
Lisa Worcester 09/25/2021 $300.00 Thank you for tirelessly hosting this great event! Your many walks have really made a difference in the world! Good luck on your next endeavor!
Anonymous Friend 09/25/2021 $30.00  
Katie Schieltz 09/24/2021 $100.00 I will be thinking about you all tomorrow, sending much love and big hugs to all! Continues prayers for a cure.
Katrina Boucher 09/24/2021 $50.00  
Lauren Langa 09/24/2021 $100.00  
Anonymous Friend 09/23/2021 $20.00  
Elizabeth Rabb 09/22/2021 $25.00 Dear Nichole and Constantine: I am sorry I can’t make it for the final BIG WOW. Just know that I am hoping and praying for the cure. I hope this weekend is a success!
Terresa Priebe 09/21/2021 $50.00  
Dan J Van Alstine 09/21/2021 $600.00 In recognition of all the work done by the Constantin Langa Family.
Virginia Bach 09/21/2021 $50.00 Hope you have a great day for the walk!
Richard Schleck 09/14/2021 $500.00  
Camelia Costas 09/13/2021 $100.00  
Kellie Amberger 09/07/2021 $200.00 Love you all!
Judith Keller 09/07/2021 $200.00 Thank you for your years of volunteering
Mary Jane Oneill 09/06/2021 $500.00  
Carol Terry 08/31/2021 $500.00 Sorry we can't join you this year. Best wishes to a special family!
Donald Askew 08/30/2021 $250.00  
Melanie Lunney 08/28/2021 $50.00 I hope the donation helps others catch the disease at birth or find support following diagnosis. Thank you for bringing awareness and sharing the opportunity to contribute.
Caryn Self Sullivan 08/25/2021 $50.00 Paula: Thank you for introducing me to this genetic disease. I am fascinated by the advances in genetics since I took my courses in the early 90s.
Christopher & Olivia Wallis 08/19/2021 $150.00 Langa family you are an inspiration to us, keep up the good fight and we are looking forward to seeing you September 25th!
Anonymous Friend 08/19/2021 $100.00 Sending love and prayers!
Tisha Blue 08/19/2021 $100.00  
Peter Pierce 08/19/2021 $100.00 Good luck in beating this
Daniela Langa 08/19/2021 $50.00 Let's help find a cure!
Ann Lusher 08/19/2021 $25.00 We can't be there for the walk, but you will be in our thoughts. The Lushers
Paula Van Alstine 08/18/2021 $100.00 I LOVE the Langa’s ❤️❤️❤️
Anonymous Friend 08/18/2021 $25.00  
  Total $5,225.00  
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