CLICK HERE FOR THOUSANDS OF FREE BLOGGER TEMPLATES »

Saturday, May 9, 2009

CDLS AWARENESS DAY!!!

Today marks the day of Cornelia de Lange Syndrome's 20th Anniversary for CDLS Awareness. If you are not familiar with the syndrome, please visit the link above. Each year, thousands of children are born with this rare syndrome but are not diagnosed due to the lack of education of the syndrome. As you can see on the site, all the children have similar physical features. Turned up little noses, thick hair and arched eyebrows, small in stature, are just to name a few of the traits. Along with physical abnormalities, medical conditions are all too common. Acid reflux, severe intestinal problems, heart defects, and cleft and raised palets just to name a few. The key to getting these children to their full abilities and functions is early intervention. Without early diagnosis, early intervention is not a possiblity. Therapies such as phisical, occupational, speech, and developmental can make all the difference in these children.
Almost excactly one year ago, my son Mason was born with CDLS. We were shocked, devastated, and confused. We were so lucky to have Mason diagnosed the day he was born...by a fluke actually. The neonatoloist saw a child with the syndrome in his days as a resident...that was 30 years prior!!! My husband went to the net and found the Foundation for CDLS right away and started educating himself. I was not ready for that yet....I needed to bond with my baby first. First and foremost, he was my baby and he was just beautiful to me. The first couple days were so painful. I don't know why, but I pretended I knew the full extent of the syndrome....when people would tell me a few tidbits here and there, I would just go in the bathroom and cry. It was hard coming to terms that my child is not going to grow up like everyone else....but that is okay. He has brought so much joy into this world, to me, my husband, and our oldest son, Reece. He has a smile that goes on forever and touches everyone he meets.

When I got home from the hospital....unfortunatly without Mason, I was a wreck. I didn't know what the future held for Mason...for us. That was so incredibly scary. Scott showed me a blog he found about another CDLS boy. His name too is Mason! I was just in awe of this little angel. He was so beautiful and he was always happy and smiling. His mom Misty, was kind enough to talk with my husband and email us with support, comfort, and advice. I have a special place in my heart for Misty's Mason.....I knew as soon as I read his story and saw his happiness, that Mason was going to be happy...and that is all that mattered to me. Thank you Misty and Mason!!! Your comfort has meant so much to our family as well as the help from our families and friends!! The CDLS families and community have been fabulous as well. I have gotten to talk to some incredible moms!!!

So please, visit www.cdlsusa.org to educate yourself. Please post a link today and share this with others!

So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.
Isaiah 41:10


32 comments:

heidi @ ggip said...

Thank you for sharing your story. It is very comforting to see the blogs of other kids with CdLS to me too. And you are the same as me, I know that a happy life is ahead and that happiness is what matters more to me.

ReeRee said...

My life has been so much happier since Mason was born. He is such a joy, and one of the most beautiful babies in the world. I love being his auntie. I love smooching him. I love when he giggles. I love how he is so nosey! He is truly an angel baby from heaven.
Thanks for sharing him with me.
AND..I expect him to sleep over soon!

Misty said...

aawwee!!!!!!!!!!! you make me cry!!!!!!!! thank you so much for your words!

your little mason is so very special to me too. i knew that he would be when scott descibed him to me and of course my heart melted when i saw the first pictures of him! you are an incredible mommy! and BOTH of your litte men are so adorable!!!!!! again, thank you for the words! mason and mason AND MEGAN AND MISTY = FRIENDS FOR LIFE LOL!!!!!!!!!!!!!!!!! ;)xxx

Rachelle said...

That is a beautiful story. Thanks so much for sharing. I am so grateful for our CdLS blogging community ~ all of you are such a big part of our lives. Great awareness post!

Angie Brown said...

Your words, like many others I have read, make my cry. Our stories are all so similar that it helps me find hope when I think there is none. Our children are given to us for a reason and they are all so beautiful! Thank you for sharing!

Anonymous said...

viagra vs cialis viagra no prescription viagra effects on women buying viagra online in britain viagra benefits viagra rrp australia side effects of viagra viagra pharmacy viagra sales viagra strips mexican viagra recreational viagra use cheap viagra canada viagra and cannabis

Anonymous said...

The writer of megzyworld.blogspot.com has written a superior article. I got your point and there is nothing to argue about. It is like the following universal truth that you can not disagree with: He?s smiling, so he?s either lying or telling the truth I will be back.

Anonymous said...

Amiable dispatch and this enter helped me alot in my college assignement. Gratefulness you for your information.

Anonymous said...

Brim over I assent to but I think the post should secure more info then it has.

Anonymous said...

dating game online sims [url=http://loveepicentre.com/]free trial dating sites[/url] dating is murder by susan jane kozak http://loveepicentre.com/ new jersey teen dating

Anonymous said...

single parent online dating [url=http://loveepicentre.com/]dating chat room[/url] pat dating http://loveepicentre.com/ clamwin not updating

Anonymous said...

http://alwayshealth.in/infection/blood-infection-health-information
[url=http://alwayshealth.in/heart-rates/abnormal-fetal-heart-axis]ebook on drugs and family[/url] internal revenue code health savings account [url=http://alwayshealth.in/natural-health/virginia-department-of-health-and-human-services]virginia department of health and human services[/url]
new york college of pharmacy http://alwayshealth.in/heart/how-to-find-the-fifth-heart-pillar-in-super-paper-mario
[url=http://alwayshealth.in/women-health/emergency-health-care-plan-diabetic]how drugs are tested[/url] erectile dysfuntion products that help maxoderm [url=http://alwayshealth.in/medical-dictionary/scientific-and-medical-advances-for-buddhism]scientific and medical advances for buddhism[/url]
home remedy for passing marijuana drug test http://alwayshealth.in/orgasm/miscarriage-after-orgasm
[url=http://alwayshealth.in/penis-growth/best-friend-sucked-penis-camp-other-boys]philippine drug help[/url] cialis personal stories [url=http://alwayshealth.in/people-health/south-carolina-health-insurance-ps]south carolina health insurance ps[/url] on line pharmacy greece [url=http://alwayshealth.in/hearts/heart-tree]heart tree[/url]

Anonymous said...

http://poow.in/letrozole/letrozole-effective-dose
[url=http://poow.in/mestinon/mestinon-rx]cvs pharmacy chandler az[/url] sports medicine careers guide [url=http://poow.in/metabolism/metabolism-of-fatty-acid]metabolism of fatty acid[/url]
viagra pages edinburgh girl manson http://poow.in/ginseng/chinese-ginseng-royal-jelly
[url=http://poow.in/melatonin/melatonin-depression]tadalafil viagra vs[/url] streptomycin drug level [url=http://poow.in/mefenamic/mefenamic-acid-250g]mefenamic acid 250g[/url]
levitra vardenafil review http://poow.in
[url=http://poow.in/xanax/xanax-bars-online-doctor]drug manufactors in canada[/url] drug testing for a small business [url=http://poow.in/letrozole/letrozole-and-pulmonary-fibrosis]letrozole and pulmonary fibrosis[/url] rhoads pharmacy [url=http://poow.in/lamivudine/lamivudine-test]lamivudine test[/url]

Anonymous said...

pecor travel http://atravel.in/car-rental_car-rental-cameron-highlands peru gateway travel
[url=http://atravel.in/cruises_carnival-cruises-to-no-where]ipod travel pillow[/url] adult travel reviews in the caribbean [url=http://atravel.in/cruise_constellation-transatlantic-cruise-reviews]constellation transatlantic cruise reviews[/url]
canadian travel companies nursing in dubai http://atravel.in/cruises_cruises-for-cheap-htm
[url=http://atravel.in/tourist_what-tourist-attraction-is-located-at-lake-bueno-vista]travel forun[/url] travel conditions tehran [url=http://atravel.in/airlines_oneworld-airlines]oneworld airlines[/url]
business travel services http://atravel.in/vacation-packages_nevada-vacation-packages accounting method for travel industry [url=http://atravel.in/expedia_expedia-vacation]expedia vacation[/url]

Anonymous said...

old fashioned names http://topcitystyle.com/black-red-sweater-color15.html autocad designers tennessee [url=http://topcitystyle.com/33-accessories-size29.html]old fashioned microphones[/url] knockoff designer purses
http://topcitystyle.com/-leather-bags-tote-purses-dolce-amp-gabbana-category39.html sag harbor fashions [url=http://topcitystyle.com/hugo-boss-shirts-brand34.html]corel designer[/url]

Anonymous said...

travel trauma http://adventurecollection.in/cruises/cruises-october-27-2005-cheap family travel paris
[url=http://adventurecollection.in/airlines/vietnam-airlines-1992]savannah travel when to go[/url] athens santorini travel [url=http://adventurecollection.in/inn/country-inn-and-suites-ocala]country inn and suites ocala[/url]
preview travel http://adventurecollection.in/travel/garmin-travel-gps-mp3-brand-box-nuvi-system-direct-msn
[url=http://adventurecollection.in/tours/cypress-valley-canopy-tours]malawi to zambia travel by air[/url] air travel health hematoma [url=http://adventurecollection.in/flight/playable-flight-simulator]playable flight simulator[/url]
military dts defense travel system http://adventurecollection.in/travel/tap-travel-brochure travel nursing jobs st marys hospital huntington wv [url=http://adventurecollection.in/hotel/hotel-bugatti-molsheim]hotel bugatti molsheim[/url]

Anonymous said...

sexy animation bvh file http://theporncollection.in/gay-movie/gay-bathroom-holes
[url=http://theporncollection.in/lesbian-video/lesbian-3gp]sexy latinas nude[/url] girls sexy fight [url=http://theporncollection.in/sex-mature/busty-mature-in-heels]busty mature in heels[/url]
adult sex toys dolls http://theporncollection.in/free-hentai/free-animal-hentai
[url=http://theporncollection.in/masturbating/free-woman-masturbating-movies]adult furry sites wikipedia[/url] amateur swingers porn video thumbnails [url=http://theporncollection.in/gay-male/serbain-gay]serbain gay[/url]
adult vactions excorted http://theporncollection.in/lubricant/stamping-lubricant
[url=http://theporncollection.in/incest/incest-storiesa]shark sexy games[/url] free suction cup dildo vids [url=http://theporncollection.in/gay-love/gay-dvd-on-sexual-saline-sacral-infusion]gay dvd on sexual saline sacral infusion[/url]
sexy naked anime girls fight http://theporncollection.in/orgy/teen-orgy-vids
[url=http://theporncollection.in/hentai-sex/hentai-dragonball-z]adult women baptism mormon dress clothing[/url] sexy nude female drawings [url=http://theporncollection.in/orgy/celbrity-orgy-password]celbrity orgy password[/url]

Anonymous said...

audlt porn pictures http://pornrapidshare.in/hot-teens/a-hot-not-for-teens
[url=http://pornrapidshare.in/for-teens/reel-teens]adult shops in sheffield[/url] apple anal insertion [url=http://pornrapidshare.in/virgins/my-precious-virgins-galleries]my precious virgins galleries[/url]
anal lesbian strap on http://pornrapidshare.in/tits/guys-licking-girls-tits
[url=http://pornrapidshare.in/xxx-girls/xxx-winamp-dancer]webcam sexe amateur[/url] movie madness porn [url=http://pornrapidshare.in/teen-city/dirty-teen-sluts-fingering]dirty teen sluts fingering[/url]
virgin mobile wireless service http://pornrapidshare.in/defloration/virgin-defloration
[url=http://pornrapidshare.in/teen-chat/teen-model-tiffany]no sew pattern for adult key collar fleece poncho[/url] country girls porn [url=http://pornrapidshare.in/free-xxx/xxx-porn-tube]xxx porn tube[/url]
free adult lesbian sex stories http://pornrapidshare.in/modelos-teen/teen-girls-deep-sex
[url=http://pornrapidshare.in/teens-top/research-on-substance-abuse-teens]misuki hentai[/url] amateur photo galleries nude [url=http://pornrapidshare.in/teen-tgp/fast-way-for-teen-to-loose-weight]fast way for teen to loose weight[/url]

Anonymous said...

mobile water board alabama http://www.orderphonetoday.com/smart-phones-category8.html mobile number portability academic research [url=http://www.orderphonetoday.com/a99-quad-band-dual-card-with-analog-tv--item74.html]mobile phone mac[/url] mobile phone carriers

Anonymous said...

dildo mpg tgp http://xwe.in/condom/silver-tex-condoms
[url=http://xwe.in/erotic-stories/erotic-french-camping-holiday-story-claudette]dildo game[/url] timberlake sexy back [url=http://xwe.in/adult-xxx/adult-inflatable-swimming-pools]adult inflatable swimming pools[/url]
free porn huge hard cocks http://xwe.in/ass-video/how-to-lick-yo-husbands-ass
[url=http://xwe.in/hcg-oral/oral-language-across-the-curriculum]free adult chat no sign[/url] amateur free porn teen [url=http://xwe.in/ass-video/bbw-monster-ass]bbw monster ass[/url]
lesbians with a dildo http://xwe.in/bdsm/bdsm-dungoens
[url=http://xwe.in/ass-video/free-fuck-lick-movies-ass]amateur nudes in new zealand[/url] amateur gallery lesbian [url=http://xwe.in/girl-anal/anal-cosmetic-surgery]anal cosmetic surgery[/url]
what makes a pussy sexy http://xwe.in/condom/condoms-left-on-door-knobs
[url=http://xwe.in/oral/anal-versus-oral-temperature]dish network adult channels[/url] cody lane porn in barxxers [url=http://xwe.in/bbw/meeting-site-zealand-bbw]meeting site zealand bbw[/url]

Anonymous said...

sample resume for group travel agent http://xwa.in/cruise/carnival-cruise-ship-sensation owners manual for trail lite 8240 travel trailer
[url=http://xwa.in/car-rental/koa-rental-car-drop-off-fee-compare-rates]long island jewish hospital travel clinic[/url] new orleans travel information [url=http://xwa.in/expedia/expedia-corporate]expedia corporate[/url]
yacht travel members new brunswick http://xwa.in/motel/mermaid-inn-motel
[url=http://xwa.in/cruises/reviews-of-princess-cruises]travel footrest[/url] north star travel sault saint marie ontario [url=http://xwa.in/car-rental/koa-rental-car-drop-off-fee-compare-rates]koa rental car drop off fee compare rates[/url]
hammamet travel service tunisie http://xwa.in/adventure/timeshares-by-owner-bon-adventure thanksgiving 2007 travel packages [url=http://xwa.in/vacation-packages/minute-caribbean-vacation-package]minute caribbean vacation package[/url]

Anonymous said...

fuck my wife porn movie [url=http://worldmovs.co.cc/full_version-italian-job/6490database/]Italian Job[/url] free movie boston [url=http://full-length-movies.com/dvd-quality-movie-glengarry-glen-ross/4535database/]Glengarry Glen Ross[/url]
blurry dvd is it caused by dvd burner sonic or movie maker [url=http://full-length-movies.com/dvd-quality-movie-after-dark-horrorfest/4362database/]After Dark Horrorfest[/url] movie presentaton and formats [url=http://full-length-movies.com/dvd-quality-movie-cougar-club/20170database/]Cougar Club[/url]
ridley scott movie with leonardo dicaprio [url=http://worldmovs.co.cc/full_version-the-perfect-storm/30210database/]The Perfect Storm[/url] adult movie rentals threw the mail [url=http://full-length-movies.com/dvd-quality-movie-coogans-bluff/24205database/]Coogans Bluff[/url]
movie listings moncton [url=http://worldmovs.co.cc/full_version-forbidden-kingdom/1703database/]Forbidden Kingdom[/url] free dvd movie rippers [url=http://full-length-movies.com/dvd-quality-movie-jonssonligan-mallorca/1608database/]Jonssonligan Mallorca[/url]

Anonymous said...

famous designers http://luxefashion.us/-sport-dolce-amp-gabbana-category93.html golf clothes women [url=http://luxefashion.us/on-sale-leather-shoes-type2.html]designer wallcoverings[/url] laurence fishburne movies
http://luxefashion.us/multi-color-v-neck-color180.html current fashion in spain [url=http://luxefashion.us/-stretch-jeans-new-category80.html]fashion forum[/url]

Anonymous said...

what happens to gum when it gets microwave [url=http://usadrugstoretoday.com/products/propecia.htm]propecia[/url] orgasm message http://usadrugstoretoday.com/categories/antibioticos.htm
prescription weight loss meds online [url=http://usadrugstoretoday.com/products/stress-gum.htm]stress gum[/url] real orgasm video galleries [url=http://usadrugstoretoday.com/#second ]exchange list for diabetic diet [/url] home remedys free staph infection impetigo
art courses in medicine hat alberta [url=http://usadrugstoretoday.com/catalogue/v.htm]Order Cheap Generic Drugs[/url] carbohydrate sensitive http://usadrugstoretoday.com/contact.htm
medical problems with small intestines [url=http://usadrugstoretoday.com/products/cefadroxil.htm]cefadroxil[/url] albuquerque health clubs [url=http://usadrugstoretoday.com/products/zebeta.htm ]student health insurance quote accounts [/url] sinus health supplement

Anonymous said...

training shoes online uk http://www.thefashionhouse.us/men-page31.html windsor smith shoes [url=http://www.thefashionhouse.us/-swim-sport-shorts-category89.html]designer fashion sketches[/url] fashion bracelet wholesale
http://www.thefashionhouse.us/dolce-amp-gabbana-polished-leather-running--item2549.html fashion figure template [url=http://www.thefashionhouse.us/dolce-amp-gabbana-one-ply-windbreaker-jackets-brand2.html]diesel shoes zach[/url]

Anonymous said...

travel lodge stony plain http://xwl.in/airport/merowe-airport travel inn hotel nyc
[url=http://xwl.in/lufthansa/untided-airways]search multiple travel sites at once[/url] best travel dvd player [url=http://xwl.in/lufthansa/hardware-installation-kuwait-airways]hardware installation kuwait airways[/url]
yahoo travel montreal http://xwl.in/expedia/expedia-corporate-travel-travelers
[url=http://xwl.in/cruise/small-boat-cruise]taulck travel[/url] travel insurance through ncl cruises [url=http://xwl.in/hotel/hotel-erotica-model-behaviour]hotel erotica model behaviour[/url]
cullman travel agency http://xwl.in/airlines/what-year-did-airlines-begin-all-night-red-eye-service american airlines travel school [url=http://xwl.in/tours/graveyard-tours-boston-ma]graveyard tours boston ma[/url]

Anonymous said...

az lottery http://xwn.in/blackjack_blackjack-tm-ii-review betting insight into sports
[url=http://xwn.in/casino-online_hotel-resort-casino-yacht-club-asuncion]free casino bonus play internet blackjack[/url] gambling age in nebraska [url=http://xwn.in/gambling-online_gambling-shops-in-uk]gambling shops in uk[/url]
national lottery results checker http://xwn.in/casino-playing-cards_birds-of-prey-of-the-world-playing-cards
[url=http://xwn.in/baccarat_antique-baccarat-liqueur-glasses]how to play baccarat[/url] gambling casinos in alabama [url=http://xwn.in/casino-playing-cards_custom-plastic-playing-cards]custom plastic playing cards[/url]
casino class http://xwn.in/keno_pogo-games-keno santo domingo casinos girls [url=http://xwn.in/baccarat_baccarat-book-casino-game-guest]baccarat book casino game guest[/url]

Anonymous said...

indian casinos in oklahome http://xwn.in/bingo_free-bingo-bonus-codes lottery foundation
[url=http://xwn.in/casino-online_casino-at-new-town-north-dakota]horse betting odds[/url] de lotto north american sweepstakes lottery [url=http://xwn.in/bingo_vocabulary-bingo]vocabulary bingo[/url]
video lotto bingo games shareware free trial http://xwn.in/lottery_wva-lottery-keno
[url=http://xwn.in/casino-playing-cards_ks-university-playing-cards]samsung blackjack photo uploading[/url] midnight bingo halls virginia [url=http://xwn.in/baccarat_play-game-baccarat-rules]play game baccarat rules[/url]
bingo game set http://xwn.in/jokers_six-jokers-cards ny lottery take 5 winning numbers monday [url=http://xwn.in/blackjack_blackjack-26-catamaran-battery-life]blackjack 26 catamaran battery life[/url]

Anonymous said...

tv chanel for videos http://topcitystyle.com/versace-dresses-brand1.html winter clothes small children [url=http://topcitystyle.com/shoes-versace-category12.html]moroccon traditional clothes[/url] fashion photographer seattle
http://topcitystyle.com/blumarine-casual-brand53.html lauren velez [url=http://topcitystyle.com/gucci-luxury-long-sleeve-polo-shirt-for-women--item1198.html]bostonian shoes[/url]

Anonymous said...

gambling georgia http://lwv.in/lottery/ma-lottery-facts insurance requirements for casinos
[url=http://lwv.in/betting/sports-betting-infomation]dragon quest monster joker game id[/url] san fran gambling [url=http://lwv.in/slots/free-hot-shots-slots]free hot shots slots[/url]
lottery kentucky http://lwv.in/casino-playing-cards/liberty-playing-cards
[url=http://lwv.in/casino-online/casino-orlando-fl]free email lottery[/url] smoking atlantic city casinos [url=http://lwv.in/casino-playing-cards/tarot-readings-with-playing-cards]tarot readings with playing cards[/url]
free casino party invitations http://lwv.in/casino-online/casino-in-brinkley california gambling [url=http://lwv.in/roulette/how-to-play-roulette-professionaly]how to play roulette professionaly[/url]

Anonymous said...

the condemed movie release date [url=http://moviestrawberry.com/films/film_the_abyss/]the abyss[/url] dare devil movie review http://moviestrawberry.com/films/film_theater_of_blood/ scary movie 4 quotes
movie theaters in memphis tn [url=http://moviestrawberry.com/films/film_colour_me_kubrick_a_true_ish_story/]colour me kubrick a true ish story[/url] youtube movie catfights http://moviestrawberry.com/films/film_feast_3_the_happy_finish/ ninja turtles 2 movie
big hooters movie [url=http://moviestrawberry.com/films/film_the_army_mascot/]the army mascot[/url] movie review on death at a funeral
forceful sex movie [url=http://moviestrawberry.com/films/film_charlie/]charlie[/url] love scene in atl the movie song http://moviestrawberry.com/films/film_mash/ mystery science theater the movie
movie solves own murder [url=http://moviestrawberry.com/films/film_gates_of_heaven/]gates of heaven[/url] windows movie maker pan zoom http://moviestrawberry.com/films/film_the_dark/ tower place movie

Anonymous said...

ken park movie [url=http://moviestrawberry.com/films/film_enemy_mine/]enemy mine[/url] movie emanuell http://moviestrawberry.com/films/film_across_the_universe/ american movie star priest
free mp4 movie downloads [url=http://moviestrawberry.com/films/film_magnum_force/]magnum force[/url] movie ads http://moviestrawberry.com/films/film_sunshine_cleaning/ molokai movie
movie motorcycles dead come back [url=http://moviestrawberry.com/films/film_the_black_cauldron/]the black cauldron[/url] li movie
kentucky fried movie sounds [url=http://moviestrawberry.com/films/film_gates_of_heaven/]gates of heaven[/url] free sex movie of a guy banging a girl hardcore http://moviestrawberry.com/films/film_young_single_angry/ blowjob free movie
peter north movie download [url=http://moviestrawberry.com/films/film_paths_of_glory/]paths of glory[/url] tag giantess movie http://moviestrawberry.com/films/film_rambo_iii/ movie farmer