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  • Partners & Promotions
    with Williams syndrome NYKNYC AUTISTIC WEIGHTED VEST Anissa s Fun Patches T h e Magic Blanket The Sensory Gallery Sensational Brain Williams Syndrome Family of Hope CONTEST GIVEAWAYS RULES PRIVACY Rules Must be 18 years of age and older to enter contests Prizes are free but we do require that you subscribe to Williams Syndrome Family of Hope You may do so by going to the Community Involvement Page and entering your information If you also have a Facebook account please select the like button on the Williams Syndrome Family of Hope Page This way we can stay in touch https www facebook com pages Williams Syndrome Family of Hope 285994588089936 No cash prizes or substitutions available Non transferable Please only one entry per prize per household Winner will be notified by email or phone All prizes will be mailed via USPS UPS depending upon the prize value and size By submitting your entry you agree that you have read and comply with our terms and conditions All entries become the property of Williams Syndrome Family of Hope and we reserve the right to publish the content in future issues at our discretion Privacy Williams Syndrome Family of Hope Inc

    Original URL path: http://www.wsfamilyofhope.org/Partners_Promotions.html (2015-03-27)
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  • Articles & News
    Allison s Story of Hope Interview with Williams Syndrome Family of Hope Founders An Unusual Neuropsychological Profile Creating a Family of Hope Trust Hormone Oxytocin Found at Heart of Rare Genetic Disorder Study on Human Emotions Marine Corps Spouse Shares Insight on Challenges of Reserve Families Children with Williams Syndrome Language Cognitive and Behavioral Characteristics and Their Implications for Intervention Longitudinal Course of Anxiety in Children and Adolescents with Williams

    Original URL path: http://www.wsfamilyofhope.org/Articles___News.php (2015-03-27)
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  • Assistance
    you may request an application by emailing erika wsfamilyofhope org A Hope Application will be sent to you along with guidelines for assistance The Hope Assistance Program provides financial assistance for certain items for individuals with Williams syndrome W illiams Syndrome Family of Hope aims to provide support and opportunities for all families to be involved through telling their story volunteering family support and advice to each other Some of

    Original URL path: http://www.wsfamilyofhope.org/Assistance.html (2015-03-27)
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  • Hope Angels
    syndrome that was taken away from me way before her time Ruby didn t get diagnosed until she was almost 2 She needed heart surgery as many Williams syndrome kids do Ruby had the surgery and the doctors didn t wait long enough to close her up they rushed right into it and it caused her to crash It took them 45 minutes to bring her back which caused a stroke which caused her to be bedridden for the rest of her time on Earth After that she could not walk talk or eat as she had before She lived that way for a little over a year before she passed away Her heart gave out on her It was just her time to go I went to check on her after I put her to bed and she open her eyes and looked at me and I got her tucked in and went to lay down A few minutes after I laid down I jerked so hard I almost fell off the bed and I went straight to sleep When I woke up I went to check on her like always before I did anything else and she was

    Original URL path: http://www.wsfamilyofhope.org/Hope_Angels.html (2015-03-27)
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  • FUNdamentals
    Starfish Reward Incentive Chart Reward Incentive Chart Sticker Charts Communication Printables Air Travel 1 Air Travel 2 Air Travel Set 1 Air Travel Set 2 Bedtime Book Starter Page Book Read Book Play With Book Book Listen To Book Go Book Go To Book Look At Book Watch Book Eat Book Drink Book Emotions Brush Teeth Calming Sequence Cards Sensory Activities Cards Lunch Crafts Bathroom Computer Time Cards Race Board

    Original URL path: http://www.wsfamilyofhope.org/FUNdamentals.html (2015-03-27)
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  • Hope Birthday Club
    Blog Slideshow Link Williams Syndrome Family of Hope Birthday Club Birthdays are very important to those with Williams syndrome We celebrate them as a family If you would like your child added to our birthday list please send their name date of birth and address to us using the form below On their birthday they will receive birthday cards from Williams syndrome families around the world If you would like

    Original URL path: http://www.wsfamilyofhope.org/Hope_Birthday_Club.html (2015-03-27)
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  • Stories of Hope
    dinner that night and I had just opened my fortune cookie when he called It read you will show what you are made of I still have that fortune So in the weeks that followed in a postpartum haze I went through the motions of motherhood At one appointment at BCH one doctor said don t expect much from her Well there s a challenge One particular morning while I was sitting googling it hit me I looked over at my baby girl who smiled up at me and it hit me My baby was the same baby I brought home from the hospital The same baby I knew that I loved from the moment I heard her heartbeat while I was pregnant I shut off the computer and never looked back Yes I mourned as any parent of a child with a diagnosis does You mourn the child you don t even know the child who hasn t become yet But you mourn In the years that followed I fought hard for my daughter I spent all day with her at home and at her therapies I saw what she could do first hand I saw and her therapists saw her reach goals sometimes on target sometimes late but damn it she met them There wasn t a day that went by that she didn t amaze me Sure her brain works differently than the average kid but ya know what she s brilliant and I ve said for years that when I grow up I d like to be her The way she sees the world the way she grasps things it s just amazing to me This road as a parent of a special needs child was not easy I threw myself into being her advocate in making sure she got a fair chance at proving herself Fifteen years later I still do But ya know what Her heart healed itself and 3 years ago she was declared heart healthy The cardiologist called her a miracle As for that doctor who told us to not expect much Guess what I didn t listen I expected everything from her and still do She doesn t get a free ride at home or at school just because someone diagnosed her For fifteen years now I ve stood behind her and fought for her to be judged on her own merits She s battled heart defects a chromosomal deletion learning disabilities dyslexia a thyroid problem and labels of all kinds and has come through it My oldest daughter taught me how to be a Mom trial by fire but I am the mother I am today because of her Allison is spit fire a dreamer and my butterfly girl Dawson s Story Dawson was born on April 12 2007 at 3lb 4oz My pregnancy was difficult I was first told that he had Down Syndrome from my AFP test and then was sent to a high risk specialist I was 40 at the time so this wasn t too much of a surprise what was a surprise was that the umbilical blood flow in the cord wasn t good and I was immediately admitted into the hospital They gave me steroids and were set to deliver at 1 pound 2 oz The doctor said it would be a miracle if he made it and then said lets all pray The prayers worked because after 2 weeks I was released and sent home on bed rest I was induced early at 34 weeks and that is where our journey truly began Dawson had the typical fussy colic associated with Williams syndrome but being baby number five I knew something wasn t right I was told he is just a preemie give him time At nine weeks he developed inguinal hernias and needed surgery During the procedure he went into cardiac arrest Everything that could go wrong did I was heart broken his kidneys were failing he needed a transfusion and he developed a blood clot and needed insulin to control his pancreas Family and friends gathered from all over to support us One month later we were released to go home His name means warrior which is so fitting He is my fighter We were told he arrested from a condition called Long QT which does exist in my family but is also prevalent in Williams syndrome The genetic test was not done until two years later after Dawson began showing signs of scoliosos another sign of Williams syndrome After two years of being told we had one syndrome we were finally diagnosed Truly it was a relief to put a name to what was going on with him He is my heartbeat and I wouldn t change a thing Dawson has made me who I am today stronger I fight harder Live sweeter Scoliosis is our battle at this time We have major decisions to make Dawson had an MRI almost two years ago to see the progression of the scoliosis The pulse ox that should not be used in a MRI was left on and his toe and his great left toe was burnt off and had to be amputated This caused him an extra challenge to walk but I am proud to say he can run now He overcame I have never been prouder So proud to be the mom to Dawson Grayson Jon Our Little Joy Grayson is my first and only grandchild He is the light of my eyes He was born on June 8th 2011 he weighed in at 5lb 3ozs He was born with a heart murmur that they heard at his 8 week check up From there he went for testing to further check on the heart murmur and they tested him for Williams syndrome and he tested positive It was a very scary road that we thought we were traveling and had many concerns for our precious Grayson As we soon connected

    Original URL path: http://www.wsfamilyofhope.org/Stories_of_Hope.html (2015-03-27)
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  • Research
    the syndrome This project has ethics approval from the University of Newcastle s Human Research Ethics Committee Approval No H 2012 0129 To investigate this a 20 30 minute questionnaire has been created which can be found at www wix com c3094005 geneticdisorders Dr Campbell hopes that the results of the study will provide a better insight into the parental disclosure process and that this in turn will improve healthcare

    Original URL path: http://www.wsfamilyofhope.org/Research.html (2015-03-27)
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