Show a friend support and get them a necklace! buy 1 get 1 50% off with code "support50"

Rare Diseases - @largerthanbws

Posted by on

“Our son Owen was born on February 7, 2018 weighing in at nearly 12 pounds and almost 2 feet long. When he was two weeks old he was officially diagnosed with an extremely rare genetic syndrome called Beckwith-Wiedemann Syndrome (BWS). BWS gives children a higher risk of developing childhood cancers. Owen’s risk is 1 in 5 children, or about 25%. It is so rare that most doctors haven’t heard of it and most pediatricians need to google it before taking care of these children. BWS affects every child that is diagnosed with it differently. Not one child is the same, which makes diagnosis and early recognition extremely tricky. Combine that with the fact that little is known about it and you have children who are getting diagnosed very late or not at all. This is concerning because  BWS babies rate of growth is so extreme that if they do get cancer it grows much quicker in them than it would in a non BWS child. For this reason, BWS babies are given ultrasounds and blood draws every three months until the age of 8. Owen was born with an extremely large tongue that never fit in his mouth which he had reduction surgery on at 7 weeks old because it was obstructing his airway. He was also born with a very large belly, hemihypertropy (enlargement or uneven growth of one side of the body), hypoglycemia, and an umbilical hernia.  Owen also sees countless specialists and therapists. Even though BWS babies go through so much they are resilient and are always smiling. Owen is our pride and joy and we wouldn’t change him for the world. Our family has spent the last two months raising awareness for Owen and all the BWS babies out there by starting Larger Than BWS. Larger Than BWS aims to connect BWS families and educate those who have never heard of it. We are hoping that the more awareness that is raised the more children will be diagnosed which ultimately could save them from cancer. Our family is proud to wear these awareness necklaces, yellow for pediatric cancer awareness and is one of the BWS colors, and stripes for rare disease awareness. Together we hope to make BWS known instead of a question!” @largerthanbws 

Rare Disease

← Older Post Newer Post →


Comments


  • download facebook spy tool

    ]

    download whatsapp for windows 10 pc freeableton live 10 free download windows 7 32 bitmicrosoft basic display driver download windows 10 freeshow my pc download for windows xpanka full game download for pcequalizer windows xp free download freegearview windows 10 download freefree download cd burner for windows 10download the latest version of adobe reader for windows 10itools for windows 7 download free
    [url=https://chromebrowser.ru/amd-radeon-hd-7400m-driver-download-windows-10-64/]free winzip software download for windows 7 free
    [/url]
    [url=https://fundamentservis.ru/input-director-for-linux-input-director/]2003 pc games download
    [/url]
    [url=https://rd-ok.ru/download-windows-10-pro-iso-file-with-product-key/]download god of war pc game setup
    [/url]
    [url=https://fundamentservis.ru/intel-centrino-wireless-n-6150-specs-intel/]battlefield v download pc free
    [/url]
    [url=https://chromebrowser.ru/firefox-download-for-windows-10-64-bit-offline/]lusrmgr msc windows 10 home download
    [/url]
    [url=https://fundamentservis.ru/ht-h6500wm-home-theater-system-samsung-ht-h6500wm/]bubble trouble game free download full version for pc
    [/url]
    [url=https://fundamentservis.ru/msi-970a-pro-carbon-970a-gaming-pro-carbon-2/]angry birds 2 pc download free full version
    [/url]
    [url=https://rd-ok.ru/download-windows-enterprise-10-iso-download/]angry birds download free for windows 7 free
    [/url]
    [url=https://bestsmiles.net.ru/download-red-alert-1-for-windows-10-how-to/]windows 8 iso download full version free download free
    [/url]
    [url=https://fundamentservis.ru/dawn-of-discovery-venice-trainer-anno-1404-venice/]dota free download for pc windows 7
    [/url]
    dymo labelwriter 4xl driver download windows 10
    download game naruto offline pc
    gpedit for windows 10 home download
    free pc games download for windows 10 64 bit
    msr606 software download windows 7 free

    https://fundamentservis.ru/techtool-pro-9-review-techtool-pro-does-it-or/
    https://mixpresent.ru/date-almost-anything-sim-date-almost-anything/
    https://bestsmiles.net.ru/download-tuneup-utilities-for-windows-10-tuneup/
    https://mixpresent.ru/brother-mfc-j6710dw-printer-drivers-brother-mfc/
    https://fundamentservis.ru/sonic-4-episode-1-cheats-cheats-tips-secrets-for/

    bingo games for pc free download
    intel high definition audio driver windows 10 download free
    army shooting games for pc free download
    free download of firefox for windows 10 64 bit
    gta 5 game download for pc windows 8

    jdbc odbc driver download for windows 10
    download teamviewer 10 windows
    email download for pc windows 10
    bigo live pc download windows 7
    canon zoombrowser download windows 10 free

    game master download pc
    speed up download windows 7 free
    website design software free download full version windows 7 free
    google earth free download for windows 10 64 bit
    internet explorer free download for windows 7 ultimate 64 bit free

    https://chromebrowser.ru/64-bit-windows-10-download-free-download-windows/
    https://fundamentservis.ru/amd-radeon-hd-8350g-amd-radeon-hd-8350g/
    https://chromebrowser.ru/free-tftp-server-download-for-windows-10-11-best/
    https://chromebrowser.ru/free-download-software-bluetooth-for-windows-10/
    https://fundamentservis.ru/dell-optiplex-760-bios-update-dell-optiplex-760/

    card game for windows 7 free download free [/url] flash player for chrome windows 10 64 bit download [/url] laserjet 1022 driver download windows 10 [/url] 8 free download link free [/url] flash professional cs6 free download for pc [/url] pc studio latest version for windows 7 free download [/url] age inquisition pc free download [/url] brightness software for windows 10 [/url] games for pc free download full version [/url] 4 free download pc windows 8 [/url]
    Annasysjap on
  • download windows 10 emulatorapun ka games pc free downloadbest pc sniper games free downloadwindows 8.1 pro pack download freecode composer studio free download for windows 10 64 bitbarbie horse adventures riding camp pc free downloadactive directory tools windows 10 downloaddownload crysis 1 for pc freedownload tftp server windows 10onedrive download pc windows 10
    [url=https://rd-ok.ru/download-windows-7-calculator-for-windows-10-get/]company of heroes opposing fronts download free pc
    [/url]
    [url=https://chromebrowser.ru/free-download-of-windows-10-pro-download-windows/]bluej download for windows 10 64 bit
    [/url]
    [url=https://chromebrowser.ru/free-photoscape-download-for-windows-10-full/]musicbee download for pc windows 10
    [/url]
    [url=https://rd-ok.ru/download-windows-10-32-bit-for-pc-download-windows/]asus suite 3 windows 10 download
    [/url]
    [url=https://hanralecon1988.wordpress.com/2021/05/21/antimalware-download-windows-10-kak-vykljuchit/]galaxy on fire 2 pc game free download
    [/url]
    [url=https://fundamentservis.ru/ga-x170-extreme-ecc-ga-x170-extreme-ecc-rev-1-0-2/]www.firefox.com free download for windows 10 free
    [/url]
    [url=https://bestsmiles.net.ru/download-showbox-for-windows-10-laptop-download/]apb reloaded download free full pc
    [/url]
    [url=https://chromebrowser.ru/fixmapi-exe-windows-10-download-how-to-download/]download windows xp system disk free
    [/url]
    [url=https://bestsmiles.net.ru/download-securecrt-free-for-windows-10-vandyke/]farmville 2 country escape game free download for pc
    [/url]
    [url=https://chromebrowser.ru/eclipse-64-bit-download-for-windows-10-eclipse-ide/]emergency 4 pc game free download
    [/url]
    winiso download windows 8 free
    avakin life download pc free
    farm frenzy 2 pc game download
    dna girl game download for pc
    linksys wmp54g v4.1 driver download windows 7 64 bit free

    https://bestsmiles.net.ru/download-plink-exe-for-windows-10-plink-1-90-beta/
    https://hanralecon1988.wordpress.com/2021/05/21/hd-themes-for-windows-10-free-download-15-best/
    https://hanralecon1988.wordpress.com/2021/05/21/hdmi-audio-driver-windows-10-download-results-for/
    https://fundamentservis.ru/lexmark-x5470-windows-7-driver-driver-for-lexmark/
    https://chromebrowser.ru/free-windows-10-download-cnet-you-can-still/

    vlc media player new version free download for windows xp free
    java 1.8 free download for windows 10 64 bit
    adobe digital editions for pc free download
    usb driver for windows 98 download free download free
    game creator app for pc download

    download xender for pc windows 10
    bratz game pc download
    cracked pc games free download
    download intel widi windows 10 free
    download and install linux on windows 10

    free windows movie maker download for xp free
    blade and soul download windows 10
    hp laserjet m1132 mfp driver download windows 10
    age of empires 2 pc game free download full version
    drum for pc free download

    https://bestsmiles.net.ru/download-streamlabs-obs-for-windows-10-download/
    https://bestsmiles.net.ru/download-rufus-exe-for-windows-10-rufus-3-14/
    https://rd-ok.ru/download-windows-explorer-10-for-windows-7/
    https://bestsmiles.net.ru/download-viber-for-windows-10-pc-viber-for-mobile/
    https://fundamentservis.ru/ralink-bluetooth-driver-for-windows-10-ralink/

    game city island for pc free [/url] programming software free download for windows 10 [/url] free microsoft office 2010 for windows 10 64 bit [/url] screensaver free download for windows xp free [/url] vice city game free download for pc windows 7 [/url] flash player 10.3 for windows 7 [/url] v download pc windows 7 [/url] terraria 1.4 pc free [/url] shop 3 game free download full version for pc [/url] flash cs3 download for windows 10 [/url]
    Annasysjap on
  • audio recording software for pc free downloaddownload ios for windows 10best pc games free download utorrentgoogle earth pro download windows 10 64 bitdownload windows 10 serial keydays gone pc game download highly compressedphotofunia download for windows xp freelogitech g300s software download windows 10download sound windows xp free freeexplorer 7 for windows xp free download free
    [url=https://fundamentservis.ru/arma-3-when-diplomacy-fails-preventative-diplomacy/]windows 7 64 bit download sp1 free
    [/url]
    [url=https://fundamentservis.ru/skype-taskbar-not-flashing-skype-icon-no-longer/]arkham asylum free download pc
    [/url]
    [url=https://fundamentservis.ru/evga-e-leet-download-evga-e-leet-tuning-utility-in/]chicken run pc game download
    [/url]
    [url=https://fundamentservis.ru/minecraft-ps3-tu25-release-date-xbox-360-edition/]whatsapp messenger for pc windows xp sp3 free download
    [/url]
    [url=https://fundamentservis.ru/ga-x150m-plus-ws-ga-x150-plus-ws-rev-1-0/]american conquest pc game download
    [/url]
    [url=https://fundamentservis.ru/zte-zmax-2-android-update-at-t-zte-zmax-2-gets/]bcd download windows 10
    [/url]
    [url=https://fundamentservis.ru/summer-event-2017-forge-of-empires-2017-summer/]free download google docs for windows 10
    [/url]
    [url=https://fundamentservis.ru/hp-elitebook-840-g4-drivers-hp-customer-support/]download game football manager offline pc
    [/url]
    [url=https://fundamentservis.ru/nexus-7-boot-animation-nexus-7-2013-android-6/]biohazard 5 pc game free download
    [/url]
    [url=https://fundamentservis.ru/tp-link-tl-pa2010-manual-tp-link-tl-pa2010-user/]csr8510 a10 bluetooth driver windows 10 download
    [/url]
    camstudio free download for windows 10 64 bit
    opera browser download for pc windows 7
    smart switch pc windows 10 64 bit download
    wzcook for windows 7 download free
    max payne game download for windows 10

    https://fundamentservis.ru/msi-970-pro-carbon-msi-970a-gaming-pro-carbon/
    https://fundamentservis.ru/its-time-to-ditch-discord-moderators-2/
    https://fundamentservis.ru/sell-humble-bundle-keys-update-humble-bundle-keys/
    https://fundamentservis.ru/diablo-3-fetish-sycophant-fetish-sycophants/
    https://fundamentservis.ru/sound-blaster-x-fi-mb3-sound-blaster-x-fi-mb3-64/

    serial to usb driver windows 7 64 bit download free
    8 bit games free download pc
    free download winzip xp windows free
    zip extractor for windows xp free download free
    project igi game download for pc windows 7

    hp 4650 driver download windows 10
    download dell touchpad driver for windows 10 pro
    magicdisc download windows 7 64 bit free
    download chrome remote desktop for windows 10 64 bit
    photoshop cs3 free download for pc windows 7

    avg pc tuneup full version free download
    document editor for pc free download
    microsoft project 2010 free download for windows 7 64 bit free
    final windows 10 download free
    windows browsers free download free

    https://fundamentservis.ru/gigabyte-ga-h97m-hd3-ga-h97m-hd3-rev-1-1-2/
    https://fundamentservis.ru/abc-amber-hlp-converter-abc-amber-hlp-converter-5/
    https://fundamentservis.ru/samsung-montage-virgin-mobile-samsung-montage-sph/
    https://fundamentservis.ru/cooler-master-ammo-533-coolermaster-ammo-533/
    https://fundamentservis.ru/m1-irons-advanced-warfare-call-of-duty-advanced/

    tsubasa 3 pc game download [/url] andy emulator for pc windows 10 [/url] itunes 10.1 for windows free [/url] pain effect free download windows free [/url] printer driver download for windows 10 [/url] download windows 10 [/url] download pc windows 10 free [/url] for windows 10 download [/url] messenger facebook for windows 10 [/url] of duty pc download ocean of games [/url]
    Annasysjap on
  • камень аметист знаки зодиака
    знаки зодиака камень топаз
    камни знаку зодиака телец
    камни знаков зодиаков рыбы
    стрелец знак зодиака камень

    https://yournewstops.blogspot.com/2021/04/blog-post_56.html
    https://hophopnews.blogspot.com/2021/05/blog-post.html
    https://bopsneeews.blogspot.com/2021/05/blog-post_16.html

    знаки зодиака рак камни
    знаки зодиака камни рака
    знаки зодиака стрелец камни
    нефрит камень знак зодиака
    знаки зодиака рыбы камни

    [url=https://newnewsabout.blogspot.com/2021/05/blog-post.html]рыба знак зодиака камни
    [/url]
    [url=https://newnewsabout.blogspot.com/2021/05/blog-post.html]камни скорпиона знак зодиака
    [/url]
    [url=https://bopspopss.blogspot.com/2021/05/blog-post.html]камень талисман знак зодиака
    [/url]

    стрельцы знак зодиака камни
    раки знак зодиака камень
    камень по знаку зодиаку
    камень какому знаку зодиака
    камень топаз знак зодиака

    Annasysjap on

Leave a comment