#Williamssyndrome

[lestatth]

Callie Truelove (Williams Syndrome)

#CallieTrueloveWilliamsSyndrome #Callie #Williamssyndrome #dog #DoodleDandy

[beelingevents]

HAPPY BIRTHDAY @jennyruthling!!! . Today we celebrate you and thank God for the marvellous creation that you are . You have the biggest heart with the biggest love for all those around you . You never let your “restrictions” dictate your life and you live life big walking hand in hand and step by step allowing Him to guide your steps . As your sister I am proud to do life with you and grateful that God saw fit to make me your sister . I love you today and always and hope that you have been blessed by all the love and honour lavished on you today xxx . . . #birthdaygirl #proudsister #family #love #grateful #blessed #thehouseofling #williamssyndrome #rarediseases https://www.instagram.com/p/B1lcMjxHNUS/?igshid=uide7g74epc1

[nomisez]

Reposted from @special_needs_children Follow @special_needs_children for Special Needs inspiration, memes, and support! . . . #sensory #specialneedsparents #specialneedsdads #specialneedskids #nonverbal #specialneedsmoms #spd #specialneeds #specialneedschildren #adhd #ASD #aspergers #autism #sensoryprocessingdisorder #angelmansyndrome #downsyndrome #fragilexsyndrome #pica #williamssyndrome #GDD #support #autismawareness #disabled #specialneedsmums #specialneeds #autismlife #community #love #family https://www.instagram.com/p/CN9AGcbBsj95DIL1xMRQlr25pJgJJtUnA2CmDI0/?igshid=aejg70bgpyl6

[creativespiritus]

Fascinating Scientific Paper on Williams Syndrome and Employment Research 

Inspirational as well. A first step may be to devise programs that help patients develop skills of personal and social self-sufficiency from a very young age. At a later stage, patients may be supported with gradual and targeted interventions when entering the labor market. Just like anybody else, WS patients wish to form attachments, be perceived as adults, and make their own living.

This project represents a pilot and unique experience in Italy and may serve as a reference model for other national institutions. Furthermore, it can serve as a positive stimulus and a model to encourage healthcare institutions and educational programs to dedicate greater attention to the psychological and social well-being of patients affected by rare conditions

“There are no normal people and non-normal people, but women and men with strengths and weaknesses and it is up to society to make sure that everyone can feel free, and no one feel alone” Franco Basaglia.

From CS Archive 2019

[gambazia]

[healow-blog]

It’s National Rare Disease Day! Natalie is 1 in 10,000!

[infernalfandoms]

raffle and donation options are now live in store, please check it out. i an giving away THREE GIFT BOXES in the raffle and you guys will find what is included in them over on the listing in store. Please please check this out, share, donate, whatever you can i need all the help i can get. Link to my store is in bio! •••••••••••••••••••••••••• #bookstagramfeatures #bookishfeature #bookstagram #epicreads #read #YAfiction #Books #Fantasy #instabook #igreads #goodreads #literature #bookworm #booknerd #booklife #bibliophile #booktography #WilliamsSyndrome #Fundraiser #Donate

[miafic]

it’s williams wednesday! and may is williams syndrome awareness month, so i’ve decided that it is finally time to talk about travis :)

travis has been diagnosed with something called WILLIAMS SYNDROME!

what is williams syndrome? here’s a brief but amazing introduction. 

https://www.youtube.com/watch?v=M6n4z0XjPh4 (this is my favorite video about WS! i would recommend the first 5 minutes.)

here’s another video that i love that shows some WS kids at williams syndrome camp! you get to see them interacting with an adult and get a good look at how excited and kind they are. it’s really sweet. 

https://www.youtube.com/watch?v=gF4DiqEdN3w

some williams traits that travis shows in MIA:

friendly

enthusiastic

curious

positive

caring

loving

talkative

small and thin

loves music

loves dancing

loves hugs

likes animals

has some chronic health problems 

has sensory issues when it comes to touch (really upset by pain, doesn’t like plastic gloves, etc.)

but intentionally seeks out other sensory stimulation (slides, hugs, music, bright colors, petting oliver)

has difficulty with fine motor skills (trouble tying his shoes)

is highly verbally intelligent (can explain himself well, articulates questions he has, easily picks up lyrics, reads quickly, writes well, etc.) 

if you have any questions, i will try to answer them, but please keep in mind that i am no expert!! :)

you can find a little more about families affected by williams syndrome here - https://www.instagram.com/williamssyndrome/

[savsmilesubam-blog]

⭐True statement. #AuroraSkye #mydaughterrocks #mybabygirl #likeagirl #likeaprincess #kindheart #fiercemind #bravesoul #differentnotless #uniquegifts #rarebeauty #williamssyndrome #wsweewarrior #shesmiles #mybeautifuldaughter

[beelingevents]

INTERNATIONAL DAY OF PEOPLE WITH DISABILITY Today is ID Day and it is designed to increase public awareness, understanding and acceptance of people with disability and celebrate their achievements and contributions So in the spirit of celebration... of you know @jennyruthling you know she is a total BOSS Always looking out for others, loving unconditionally, praying over everyone who is fortunate to have her in her world and taking on what life and God puts in front of her with strength and courage On the weekend Jen performed with the incredible @midnight_feast__ company in their staged reading of “The Blue Bird” Jen has never done something like this and took to it like a duck to water and as her big sister I couldn’t be more proud!!! Sometimes in the minutia of life it is easy for me to forget the uniqueness of my sister because to me she isn’t my disabled sister, she is my sister who happens to have a disability and it rarely stops her from taking over the world!!! If you have someone like this in your world remember to celebrate them as much as I know they celebrate you xxx #proudsister #idday #love #family #grateful #blessed #thehouseofling #williamssyndrome #rarediseases #dontdismyability (at NIDA - National Institute of Dramatic Art) https://www.instagram.com/p/B5m2AYEnpur/?igshid=qxeok6tm540e

[7-slotcisco]

Yesterday I participated in my first #WalkForWilliamsSyndrome at #SantaMonica. Great turnout and had a great time representing my niece, Carla. Definitely looking forward to next years walk. #TeamCarla #WilliamsSyndrome (at Santa Monica, California)

[reciperenovator]

Excited to read this next by author @jenniferlatson #williamssyndrome #autism #bookstagram

[usmccarter]

#Repost @johnscrazysocks (@get_repost) ・・・ The Williams Syndrome Awareness Socks are a hit! @krit_xo says "Seriously, how cute are these socks and the hand written thank you letter! Go support @johnscrazysocks !! 😀 #williamssyndromeawareness" #JohnsCrazySocks #SpreadingHappiness #williamssyndrome #williamssyndromeassociation #crazysocks #funsocks #socks #givingback #shopsmall #smallbusiness

[randomnessofme]

As May ends, remember that it's Williams?Syndrome Awareness Month. My darling cousin, this little cutie, lives with #WilliamsSyndrome. She's joy personified, reaches out to the world and we worry about her friendliness. #WilliamsSyndromeAwareness. http://cbsloc.al/2qlguot

[barnyardgroup]

Supporting my admired mother & friend @laurel_rossi at a #fullhouse #charity dinner tonight #nyc - #WilliamsSyndrome. Join us online for #WhiteNight (#rarediseases will never be dark again) Awesome online Benefit #Auction is live and online NOW to raise research $$. Click here - 501auctions.com/whitenight #RareButReal @TheWSA @Cipriani - please bid - I'm truly honored and overwhelmed being here Laurel Rossi you are my friend and idol. All I can say is "I'm speechless" thank you for tonight TheSocialArchitects is on your team! Let's cure this! (at Cipriani Wall Street)

[healow-blog]

February is Congenital Heart Defect Awareness Month which is ironic, because Natalie’s heart condition was diagnosed in February 14 2014. A Valentine’s Day I will NEVER forget. 1 in 100 babies are born with CHD. CHD is the #1 birth defect worldwide. 

We have been so lucky with Nan’s heart. When she was first diagnosed she was diagnosed with mild pulmonary stenosis, she eventually grew out of it like her cardiologist predicted and now was rediagnosed October 2016 with mild aortic stenosis.. which is very common with people with Williams Syndrome.

I still remember everything like it was yesterday. Feb 7 2014 we took Nan to her 9 month checkup at the pediatrician. We saw a doctor we’ve never seen before, he started doing routine things and then said “Okay so why hasn’t her heart murmur ever been documented?” I just started crying.. I was in shock. I had her in and out of the doctors office pretty regularly for checkups, shots, problems with eating etc so I was in SHOCK. So I’m just freaking out bc i’ve never experienced this before I was terrified. He then told us he would get us an appointment to a cardiologist for the following week to find out what was going on.. OMG talk about the scariest week of my life. The unknown is so scary, especially when it comes to your child’s health.

After watching my baby, not even a year old get an EGK, oxygen checked and an echo.. I was so scared. As a parent, your first thoughts are “Is my child going to die?” “Is my child’s life going to be restricted?” “Why my child?” “Why not me? Take me instead.” One of the hardest things i’ve experienced as a parent is trying to protect my child from something, I can’t. It’s completely out of my power. The future is what scares me the most, the more her body grows her heart problems can change. All I can do is remain getting her the best health care and staying on top of it. It’s better to be safe than sorry.

In honor of CHD awareness month we are everyone to wear red tomorrow, Friday Feb 3 2017!