#raresyndrome

[prophetpedia]

SAD STORY OF GARY "STRETCH" TURNER

SAD STORY OF GARY “STRETCH” TURNER

Gray Turner is popular as the Elastic Man. He has the stretchiest skin in the world. Gray was born in year 1971 in United Kingdom at the time of birth, midlife told that he had loose skin but no one knew the actual reason behind it. When Gray was 13 years old doctors figured out he had a rare syndrome which is popularly known as Ehlers Danlos syndrome. EDS is a very rare genetic tissue disorders…

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[debbiehepworthjorde-blog]

We staged a remake of a sentimental photo of the first time we met Erica Perry, from New Zealand, in SLC. Erica has Rare Miller Syndrome like both my kids, Heather and Logan. Her family became the only other family world wide to have 2 kids with Miller Syndrome after her brother was born, also with Miller Syndrome, 3 years later. We had so much fun last week when their family visited us again 32 years later! Families supporting families at the Foundation for Nager and Miller syndromes, FNMS, conference in Provo this month! . . . #raresyndrome #raresyndromes #friends #sentimentalphoto #inspiring #livinglife #livinglifelikeanadult #livinglifetofullest #supportingfamilies #fnms #millersyndrome #love #loveislove #nonprofit #nonprofitorganization #gettingtogether #sharinglove #being #beinginthemoment #empowering #funtimes https://www.instagram.com/p/Bzy5rK2lLrl/?igshid=4gd4y8bcnmzq

[debbiehepworthjorde-blog]

The Foundation for Nager and Miller Syndromes FNMS bi-annual conference was in Provo, Utah this year. Heather, Logan, and I had awonderful time seeing and spending time with families who face some of the same challenges that we face. We are reminded that we aren't the only ones who have health and social challenges. This helps all of us feel more empowered and optimistic so we can handle the many obstacles before us. We are so grateful for our FNMS family! We are grateful for all of you who donate to FNMS! If you haven't yet donated to this parent-run non-profit organization that makes it possible for children from all over the world who have Nager and Miller syndrome to get together bi-yearly, please go to their website and donate today! We all thank you! http://fnms.org/ — with Heather Madsen and Logan Madsen. Feel free to tag yourselves in this photo FNMS families!💓 . . . #nonprofit #millersyndrome #raresyndrome #raresyndromes #nagersyndrome #nagersyndromeawareness #fnms #disability #disabilityawareness #overcomingchallenges #overcomingobstacles #supportgroups #groupsupport #provoutah #provo #inspiring #donate #peoplesupport #supportpeople #bestfriends #familysupport https://www.instagram.com/p/BzrIDieFVTm/?igshid=15r30gzje41lp

[kaitlynrollins-blog]

Click here to support Car for stay at home mom with 3 kids organized by Kaitlyn Prencipe

Hi, my name is Kaitlyn and I’m currently a stay at home mom of 3 boys ages 4, 3 and 3 months. My 3 month old was diagnosed with a rare syndr

[kaitlynrollins-blog]

My handsome happy little man 💙

[kaitlynrollins-blog]

Click here to support Car for stay at home mom with 3 kids organized by Kaitlyn Prencipe

Hi, my name is Kaitlyn and I’m currently a stay at home mom of 3 boys ages 4, 3 and 3 months. My 3 month old was diagnosed with a rare syndr

Anything helps. We are thankful to anyone who donates. Thank you in advance.

[mandifries]

When he woke up this morning #allanherndondudleysyndrome #standingtall #specialneeds #raresyndrome #kingstonproject (at Fresno, California)

[islandboiphotography]

"You know my name, not my story. You’ve heard and seen what I have done, but not what I have been through. You might be thinking , you know who I am already; the model,  that girl Berlange with the afro and obnoxious laugh. You’re right..that’ts all me!  BUT, I’ve been cheating myself out of celebrating my bravery as well as I have cheated you out of knowing a brave soul. A soul that stands taller than just a beautiful smile, big afro and beautiful skin. For what it’s worth, allow me to reintroduce myself…. my name is Berlange and I am a KTS (Klippel Trenaunay Syndrome) survivor." Words from @bellenge --- -- Model: @bellenge Mua: @asatousohna Designer: @gavarcia Photographer: @islandboiphotography #islandboiphotography #beautyofawoman #blackisbeautiful #melanin #blackgirlmagic #blackgirlsrock #unapologetic #myblackisbeautiful #mygoliath #kts #klippeltrenaunay #klippeltrenaunaysyndrome #chronicillness #bpstorytelling #vascularanomaly #raresyndrome #birthmark #darkpurple #onelegstrong #unstoppableB  #Modelwithkts #berlangestory #curlbox #afroellemag #afropunk #africaninspiredshow #inspiration #motivation