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#costellosyndrome

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Vincent is 4.🎂🎂🎂🎂RepostBy @soppi00: "Tänk att det redan gått 4-år sen vi fick den bästa presenten att bli föräldrar till underbara, älskade och unika du💙Tänk vad mycket du har lärt oss under denna tid. Att få ett barn med funktionsvariation är tufft pga okunskap och lite fler hinder på vägen men också det bästa som hänt mig❤️Du ger sån glädje och kärlek till alla runt om dig och man smälter vid din närvaro! Grattis min älskade Vincent❤️#costellosyndrome#fightingspirit#winningsmile#intesåkonstigt" (via #Quick reposter @AppsKottage)

Work with mommy then Genetics mouth swab. Praying this test gives us answers and clarity. #jacobsjourney #rasopathies #costellosyndrome #genetics #phil4:6-7

I used to  hang out the laundry quite often because Ulysses was not totally toilet trained and that I had decided not to use nappies anymore hoping he would get toilet trained quicker this way...well it just took a few years for him to master going to the toilet at the right time.So I used to hang out the laundry and Ulysses to enjoy his freedom.One of his games was to wear his awesome Blue Demon mask and to attack savagely the army of sheets which was taking the control of our courtyard.#familyphotographynow #FPNimagination #costellosyndrome #syndromedecostello

Hadley loved the lights and the cold weather. #lehighvalleyzoo #christmaslights #costellosyndrome #hadleystrong

Little baby Daisy. She was only a few moths old and had already done a two month stay in neonates and a two month stay in Great Ormond Street including a visit to their nicu. We had returned to our local hopital, she was puffy from steroids and already had an impressive number of consultants involved in her care. We weren’t sure if she would see her first birthday at that point. She made 12 of them 🙌🦋🌈⭐️💔#costellosyndrome #raredisease #wasthisintheplan #teamdaisy

Meet my daughter Maggie. She is 11 and has the BEST personality ever! (I can’t take any credit ... she has my mother’s genes!) Maggie has a keen obsession with the one and only @jimmyfallon 😃 He literally makes her face shine with happiness! Thanks Mr F for the laughs #hashtagthepanda #fistbumps #stanfordchildrenshealth #costellosyndrome

I have an extra special big brother who has given me opportunities to love, serve, and laugh like I never could have otherwise. He's also opened my world up to an incredible group of people that I'm lucky to call friends. I love all of these sweet faces. Thanks for an amazing conference in Florida, and I'll see everyone in Baltimore! #costellosyndrome #costellosyndromeconference2017

Clay. Canada. Clay fell in love with Santa at 36 yrs. of age finally!! (wink wink)
Xmas 2009 @alicemckinleydaxon #costellosyndrome

MOST RECENT

Arden and Santa at her school :-) @team_arden #costellosyndrome

Clay. Canada. Clay fell in love with Santa at 36 yrs. of age finally!! (wink wink)
Xmas 2009 @alicemckinleydaxon #costellosyndrome

Too much stimulation on one day, means quiet day at home sleeping the next day for Joey. 😞 #joeycsjourney #costellosyndrome #teamjoeydavid #fiveandahalfhourssofarsleeping #raredisease #overstimulationkickshisbutt #spdsucks

Podrás conocer a la maravillosa Andrea. La niña con el corazón más fuerte del mundo, hasta el 17 de Diciembre en el centro Infanta Elena de Alcantarilla.
#art
#arte
#boligrafo
#ballpenart
#ballpen
#discapacidad
#bic
#manzana
#costellosyndrome

Cristina 5 1/2y And siblings . Spain.RepostBy @kika_pin: "Disfrutando del puente de la Inmaculada!!!" (via #Quick reposter @AppsKottage) #costellosyndrome

So thankful for my tribe this week! From the phone calls to offer support and pray for Kati today to the amazingly thoughtful birthday presents that arrived early to encourage me... we are so blessed! As we travel to Duke this morning with empty bellies through the sleet I am praising God for my calm spirit and I am claiming good news today! He is so faithful! #teamkatibug #rarediseaseawareness #costellosyndrome #blessedbeyondmeasure #thankfulforthejourney #loveyourtribe

Work with mommy then Genetics mouth swab. Praying this test gives us answers and clarity. #jacobsjourney #rasopathies #costellosyndrome #genetics #phil4:6-7

Laure.Quebec,Canada.@lalaure.m #costellosyndrome

RepostBy @ariane_odessy: "“Dear Santa,
Ace: i wish for a paw patrol toy
Harvey: I wish that everyone can fly.😅 #christmas #wish #presents #kids #santasgrotto #santa #newquay #cornwall #christmasholidays" (via #Quick reposter @AppsKottage)#costellosyndrome

This is a big week for us! Kati has her quarterly cancer screening on Friday. Please pray for great results, comfort for her, safe travels, and peace in my anxious heart! #teamkatibug #rarediseaseawareness #costellosyndrome #blessedbeyondmeasure #thankfulforthejourney

Refused to eat anything all day. Doesn’t tolerate his tube feed. Give him some gripe water. He goes to town on Dole Chocolate Covered Bananas. #joeycsjourney #teamjoeydavid #costellosyndrome #doledippers #chocolatecoveredbananas #tubielife #funtobeone #hecaneatwhateverhewants

Joey, 6y USA. #costellosyndrome

Sometimes the littlest things take up the most room in your heart - Winnie the Pooh #Costellosyndrome #justkeepswimming #Ellen #Dory #FindingDory #Costello

Kennedy and mum . RepostBy @areid4: "Waiting to go home! She’s a spitfire this one." (via #Quick reposter @AppsKottage) #costellosyndrome

RepostBy @curlyloks: "Hadley loved the lights and the cold weather. #lehighvalleyzoo #christmaslights #costellosyndrome #hadleystrong" (via #Quick reposter @AppsKottage)

Hadley loved the lights and the cold weather. #lehighvalleyzoo #christmaslights #costellosyndrome #hadleystrong

Ulysses 16y France.#costellosyndrome @anahita.avalos

Kennedy. RepostBy @areid4: "She’s doing pretty well so far. My guess is tomorrow may be rough as some of the meds begin to wear off and things start to come to life. In any case she’s a real trooper. #love #answeredprayers #lotsofsupport" (via #Quick reposter @AppsKottage) #costellosyndrome

Please say a prayer for my sweet girl! She has been sick since Saturday. A simple cold can get so ugly for her so quickly! Thankful her doctors got her in the office early Monday and we are now on day 3 of meds! It’s so hard for her little body to fight off sickness! Hopefully she will be back to her happy, silly self very soon! #teamkatibug #rarediseaseawareness #costellosyndrome #blessedbeyondmeasure #thankfulforthejourney

RepostBy @lauragomesdepaiva: "* Não há no mundo exagero mais belo que a gratidão . "👐🍃❣
#Mamãe 💞
13 / 11 /2017" (via #Quick reposter @AppsKottage) #costellosyndrome

Trin, Thailand @ningchint #costellosyndrome

Hello to all members of costello Syndrome...hello from Lina 19 months from Málaga spain who is suffering from costello syndrome...big kiss 😘😘😘😘💪#costellosyndrome @issazaim

This IS my sunshine! This IS part of my world! This IS what love is! So many think having a baby will complete them. You need to love within before sharing love. Love is pure. Love is tranquil. Love will heal. #pureness #loveyourself #loveislove #lovewithin #hadleymarie #hadleystrong #wewillprevail #costellosyndrome

Finding Dory Cake Smash!!! This handsome guy has a rare disease called Costello Syndrome. He is the only child in Jacksonville with this disease, but he is strong and doesn't let it hold him back. He just keeps swimming!

Thank you to Bold City Confections for this adorable cake!  @boldcityconfections #Costellosyndrome #justkeepswimming #Ellen #Dory #FindingDory #Costello #Boldcityconfections

When you spend the whole day in Durham for specialists appointments #1 and #2 for the week after an IEP meeting yesterday... you naturally must come home with matching dragon pajamas! This girl is my hero!! The 5am wake-ups to travel to doctors and therapists and still she always has a smile for me! She is stronger than anyone I know, and I am so blessed to be her mama! #teamkatibug #rarediseaseawareness #costellosyndrome #blessedbeyondmeasure #thankfulforthejourney #sheismyhero #tinybutfierce #dragonmom #babydragon

Henry 2y,Laurence 4y,Ulysses 16y,Helaina,Colin And Cath Stone Manchester Costello CFC conference 2017 #costellosyndrome

Henry 2y and dad UK #costellosyndrome

Mieke, Vera 5 1/2y Ulysses 16y and Laurence 4y Manchester Costello CFC conférence 2017 @leoniedezwarte @anahita.avalos #costellosyndrome

Dascha 3y Russia RepostBy @nataliyaorlova8879: "#Даша_занимается Вот научились на четвереньках ползать" (via #Quick reposter @AppsKottage) #costellosyndrome

Sharitza RepostBy @rick517ruiz:
(via #Quick reposter @AppsKottage)#costellosyndrome

Ulysses 16y France @anahita.avalos #costellosyndrome

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