Wiedemann-Steiner Syndrome Warriors

Wiedemann-Steiner Syndrome is a rare genetic disorder (resulting from mutations of the MLL--also called the KMT2A--gene); which causes developmental delays, short stature, hypotonia (low muscle tone) especially during infancy, characteristic facial features, excess hair (especially by the elbows). Although this condition was originally described in 1989, it wasn't until 2012 it was "discovered" and given the Wiedemann-Steiner Syndrome (WSS) name. Although we're grateful to have finally gotten The Diagnosis; there is still so many unanswered questions, being this condition is so "new" to the medical world. What we DO know is that our Warriors are so strong, so brave, so inspiring. So full of joy despite having to struggle to reach every milestone thus far. Thanks to Facebook, we (these precious Warriors' Mommies) found each other, all having gotten the diagnosis around the same time period. We've been able to share, learn from each other. We are from all over the world--Vancouver, British Columbia; England; Norway; Ireland; as well as all over the U.S. There are currently only 23 of us that found each other in this Group, not many more have been diagnosed at this time as of yet. We found out there is a one day clinic this summer in Maryland; two of the top Geneticists in the world are flying in (from the UK) for this, for they have been studying WSS since the discovery in 2012. This is THE opportunity for us to be able to meet with these Geneticists and be part of a study solely focusing on this rare, unknown syndrome. To help our babies in the future to be the best they can be; to learn more about what to expect and how to help. To be able to help more families in the future who will be diagnosed with this condition. For some of us, such as myself (Sienna Rose's Mommy), this special meeting is only a two hour drive; but for others living either across the country or in a different country, I along with the other Mommies within a drives distance, wanted to try to raise money (and awareness) to help with the costs for the flights/hotels to ensure that all of these 23 families can be a part of this ever important chance to learn more and help our babies (and future Warriors). A little goes a long way....❤️✌️.....

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  • Áine D 
    • $6 
    • 55 mos
  • Sharon Campbell 
    • $50 
    • 56 mos
  • Kristen A 
    • $200 
    • 72 mos
  • Anonymous 
    • $50 
    • 72 mos
  • Ellie Lue 
    • $20 
    • 72 mos
See all

Organizer and beneficiary

Jennifer Rose Springsteen 
Organizer
Baltimore, MD
Libby Woolford 
Beneficiary
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