Wiedemann-Steiner Syndrome Warriors

$9,353 of $10,000 goal

Raised by 137 people in 44 months
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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Hello Cheryl Siloti! So glad you have found us! I just emailed you on FB (it says it went to the "Other" folder since we are not Facebook Friends (yet, anyway). ----Jennifer :)
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We are only $1070 away from our goal with a little more than a month left to go!! Feeling overwhelmed with gratitude and love; thanks to so many who have helped us get here. Please continue the sharing; know that you not only touched our lives but helping us get to this special clinic will also help many more families in the future thanks to the research that will be done and shared on June 29th. THANK YOU AND GOD BLESS US ALL. And today, we share with you one of our oldest Warriors, beautiful Izzy who is in her 20's and lives in the UK. She is a true inspiration to all of us; her strength and determination and spirit are truly admirable. :))))
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Time is running out!! Thank You to all that have shared and donated; please help us finish strong!! We have connected with a few more families from around the world thanks to this! Here is one of the Warriors that recently found us--beautiful lil Abby :)))
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Only 57 days til this takes place!!! THANK YOU and please keep sharing to help us; we've come so far already.....peace and love, from our lil Warriors and families. Xo.
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Read a Previous Update
Chris Straw
40 months ago
3
3

Hello, we found out that our daughter (Jemimah) has WWS yesterday She is now 10.. Would love to chat and be involved with other parents and any clinics going on.

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Sarah Hall
37 months ago
2
2

Hi, We just got an official WSS diagnosis for our daughter. Would love any info, support etc.

+ Read More
Deb Marmor
42 months ago
2
2

We would love to connect and be involved in the clinic. Our daughter Abby (4) was diagnosed 2 years ago.

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Catherine DeMars
25 months ago
1
1

Hello my daughter Clarissa is 6 and was diagnosed a year ago. I'd like to connect with other parents too.

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Norna Melsop
26 months ago
1
1

Hi my daughter is 14and was diagnosed with wiedmann Steiner w in 2010i think she has a severe form of it.we live in cork city Ireland

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Catherine Burleigh
36 months ago
1
1

Our daughter is 3.5 and we have just started the lengthy process to get her DNA tested for Weidemann-Steiner. She may have a milder case of it. Would love to connect with other parents in my shoes!

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Kareena Boers
40 months ago
1
1

Hi! I am a private duty caregiver for a family and the little girl I take care of was just diagnosed with this syndrome this past Thursday! Her family and I would love more information on this and interested in the clinic!! I can be reached at kareenaklahr@icloud.com. Thank you!!

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Allison Barnes
43 months ago
1
1

I have it I am 27

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Erika Erika
7 months ago

Hallo. Mein Tochter 10 Jahre alt und hat WSS Syndrom. Ist jemand von Thüringen...????dan meld dich, !!!!

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Kristi Beckham Adkins
19 months ago

Hi, my son is currently being tested for this. He is almost 10 and I'm almost positive this is what he has. He look so much like the pictures I have seen and has similar symptoms. I would love to connect with some of you for questions and support. We are in the process of scheduling our second round of genetic testing. He has the anomaly in the gene identified as responsible for the genetic disorder. His father and I are awaiting genetic testing for ourselves.

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Monica Piccolo
28 months ago

Is there a group to join for WSS?

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Wendy Vine
37 months ago

Hi, My 7year old son has just been diagnosed with WSS and I would to connect with other parents.

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Cheryl Siloti
39 months ago

My beautiful, soon to be eighteen year daughter, Shayla was just diagnosed with WSS today. Is there a fb group I could be invited to? If not, I would like to start one!

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Libby Woolford
40 months ago

Chris Straw, I sent you a fb message that I think went to your "other" folder. Welcome to the WSS family!

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Cara Larson
40 months ago

Just got a diagnosis for my son today of WSS who is 10 months old id love to connect with these other moms!!!

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Margot Schmiedge
41 months ago

Hello, I'm the founder of Kabuki Syndrome Network. I couldn't find contact information for WWS. Could someone please contact me at margot@kabukisyndrome.com

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Libby Woolford
42 months ago

Kayleigh, I just sent you a message via fb. It may go to your "other" folder.

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Kayleigh Novakovich
42 months ago

Hi all! I would also love to make contact. My 6 year old daughter has recently been diagnosed with WSS

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Shannon Gray
43 months ago

Catherine I have reached out to you on Facebook, please check your others folder

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Catherine Scarth
43 months ago

Hi I would love to make contact . Our 9 year old son has just been diagnosed with WSS

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$9,353 of $10,000 goal

Raised by 137 people in 44 months
Created February 21, 2015
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KA
$200
Kristen A
40 months ago
1
1

Love my Emma

$50
Anonymous
40 months ago
EL
$20
Ellie Lue
40 months ago

Good luck!

PW
$25
Pat Winkle
41 months ago

In honor of Franc! Keeping all of the families in my prayers.

Chris Straw
40 months ago
3
3

Hello, we found out that our daughter (Jemimah) has WWS yesterday She is now 10.. Would love to chat and be involved with other parents and any clinics going on.

+ Read More
Sarah Hall
37 months ago
2
2

Hi, We just got an official WSS diagnosis for our daughter. Would love any info, support etc.

+ Read More
Deb Marmor
42 months ago
2
2

We would love to connect and be involved in the clinic. Our daughter Abby (4) was diagnosed 2 years ago.

+ Read More
Catherine DeMars
25 months ago
1
1

Hello my daughter Clarissa is 6 and was diagnosed a year ago. I'd like to connect with other parents too.

+ Read More
Norna Melsop
26 months ago
1
1

Hi my daughter is 14and was diagnosed with wiedmann Steiner w in 2010i think she has a severe form of it.we live in cork city Ireland

+ Read More
Catherine Burleigh
36 months ago
1
1

Our daughter is 3.5 and we have just started the lengthy process to get her DNA tested for Weidemann-Steiner. She may have a milder case of it. Would love to connect with other parents in my shoes!

+ Read More
Kareena Boers
40 months ago
1
1

Hi! I am a private duty caregiver for a family and the little girl I take care of was just diagnosed with this syndrome this past Thursday! Her family and I would love more information on this and interested in the clinic!! I can be reached at kareenaklahr@icloud.com. Thank you!!

+ Read More
Allison Barnes
43 months ago
1
1

I have it I am 27

+ Read More
Erika Erika
7 months ago

Hallo. Mein Tochter 10 Jahre alt und hat WSS Syndrom. Ist jemand von Thüringen...????dan meld dich, !!!!

+ Read More
Kristi Beckham Adkins
19 months ago

Hi, my son is currently being tested for this. He is almost 10 and I'm almost positive this is what he has. He look so much like the pictures I have seen and has similar symptoms. I would love to connect with some of you for questions and support. We are in the process of scheduling our second round of genetic testing. He has the anomaly in the gene identified as responsible for the genetic disorder. His father and I are awaiting genetic testing for ourselves.

+ Read More
Monica Piccolo
28 months ago

Is there a group to join for WSS?

+ Read More
Wendy Vine
37 months ago

Hi, My 7year old son has just been diagnosed with WSS and I would to connect with other parents.

+ Read More
Cheryl Siloti
39 months ago

My beautiful, soon to be eighteen year daughter, Shayla was just diagnosed with WSS today. Is there a fb group I could be invited to? If not, I would like to start one!

+ Read More
Libby Woolford
40 months ago

Chris Straw, I sent you a fb message that I think went to your "other" folder. Welcome to the WSS family!

+ Read More
Cara Larson
40 months ago

Just got a diagnosis for my son today of WSS who is 10 months old id love to connect with these other moms!!!

+ Read More
Margot Schmiedge
41 months ago

Hello, I'm the founder of Kabuki Syndrome Network. I couldn't find contact information for WWS. Could someone please contact me at margot@kabukisyndrome.com

+ Read More
Libby Woolford
42 months ago

Kayleigh, I just sent you a message via fb. It may go to your "other" folder.

+ Read More
Kayleigh Novakovich
42 months ago

Hi all! I would also love to make contact. My 6 year old daughter has recently been diagnosed with WSS

+ Read More
Shannon Gray
43 months ago

Catherine I have reached out to you on Facebook, please check your others folder

+ Read More
Catherine Scarth
43 months ago

Hi I would love to make contact . Our 9 year old son has just been diagnosed with WSS

+ Read More
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