let's do it! #insaneinflatable5k #family #fun #mypumpkin #chromosomedeletion #hydrocephalus #dysphagia #developmentaldelay #specialneeds #joinourteam #TeamCaleb
insaneinflatable5k - specialneeds - mypumpkin - family - joinourteam - hydrocephalus - chromosomedeletion - dysphagia - developmentaldelay - fun - teamcaleb -
She is the most amazi g little girl, i have yhr best neice ever #hydrowarrior #hydrocephalus #sadiebug #strong #fighter #loveher #neice
avee_o - chels9214 - y.r.m_miguel - ryleignsmommy15 -
Today Is National Rare Disease Day. I Love My Son With Everything In Me. He's A True Warrior & My Hero. #TEAMJAYDIN #wrdd2015 #ilovesomeonerare2015 #hydrowarrior #hydrocephalus #findacure #globalgenes #jeansforgenes
teamjaydin - wrdd2015 - globalgenes - ilovesomeonerare2015 - hydrocephalus - findacure - hydrowarrior - jeansforgenes -
mdale31 : Team Jaydin 💪
d.aniyah.b : 😍😍👏👏😘😘
tylahlove_ : 😘😘😘
prettyone2k11 - catinagoings - dreparker2 - lovinmy_life_ -
Today is Rare Disease Day. Spina Bifida, Hydrocephalus & Chiari Malformation are all considered rare diseases. Her SB effects her muscles, so she needs her forearm crutches to walk and wears braces 10+ hours a day. Her Hydrocephalus has not caused any issues, except for her needing brain surgery (Endoscopic Third Ventriculostomy) when she was 13 months old. We hope the surgery is a cure but unfortunately at any point she could become symptomatic. Her Chiari Malformation has caused few problems, except for an extremely sensitive gag reflex. All people with these have a range of different symptoms. Despite being born with these conditions, plus others that don't fall under the "rare" category, she is the brightest child with the strongest will. She has a full vocabulary, and is starting to understand she does things differently then other children. She is so so deeply loved & her life is beyond joyful.
ma20166 : #rarediseaseday #spinabifida #hydrocephalus #chiarimalformation
melissamix : She has a great smile!
kristencharlini : She looks so grown up here! 💗
journeyappstore : Hi! We are doing something very special and would love for you to be apart of it. Please read my last post :)
maireoh - natajov - andrearenee_mc - blyebrarian -
She is loving her first greenie! #gsdlife #germanshepherddog #blinddog #blindpuppy #happydog #hydrocephalus
halosforpaws - silviafortu25 - remingtonsangrey - cassiekreider -
babylink - angel - angelmom - spinabifida - hydrocephalus - stillborn - angelbaby - stillbirth - miscarriage -
cocoasushi : #babyLink #miscarriage #stillbirth #stillborn #angel #angelbaby #spinabifida #hydrocephalus #angelmom
veggie_power30 - chelleaveo - mrsz425 - fgironworks -
jesparlarsson : @kalleloebbert
smallfrykc : Shut up with those glasses. 😍
amindasmom : He looks so grown up! Miss him and Aiden
lly712 : Miss them tons @hydromomma
cliffsgirl : Hipster in a monkey jacket lol
matrochano : What a good looking lil man 😃
matrochano - amie71081 - johnkowalski44 - brittany_pasinski -
We 💙 our little rare fighter! Wear jeans today to show support for all the rare fighters out there ⚓️👖☺️ _____________ #hydrocephalus #raredisease #jeansforgenes #WRDD2015 #ilovesomeonerare
bump2buff : beautiful family!!
saradical : You guys are the cutest!!!
mama_gabb : Beautiful family 😍
bicepsandbroccoli : Soooo cool!
lruvs : You guys are a beautiful family !!
alishacassandra : I love it! And you guys!
wendykm415 : All adorable, HAPPY, POSITIVE , HEALTHY😇😇😇
dgonzalesrn : I love this picture! Elliott's expression and babies with their helmets. Toooo cute!!
goldencupcakes - britnyrose14 - megpie.15 - mrsphilley -
It's worldwide rare disease day, and my little angel truly is a dime in a dozen! She has spina bifida but it certainly doesn't have her #spinabifida #hydrocephalus #angelgirl #rarediseaseday
cristymorrow27 : She is getting so big. What a beautiful girl.
stephanie.kuderna : #beautiful
cmw804 - mctd_support - scookler - armidaga -
My lil girl not so little in her new rain coat all ready for Nanan ann and grandad baz to take me out !! #mylittlegirl#newcoat#spinabifidababy#spinabifida#hydrowarrior#hydrocephalus#socute#7weeksold
socute - mylittlegirl - spinabifida - hydrocephalus - hydrowarrior - spinabifidababy - newcoat - 7weeksold -
sophsss__x : She beautiful x
charlottebrookes94 - nicliver82 - stone_becca - sauceballoon -
It's hard to put into words what's been happening in the past few months - we still don't really know. The numbness from January that left us with a week long stay in the hospital still has us with not a lot of answers. The cyst (syrinx) that was in her spinal cord at diagnosis was still there - it changed slightly but that wasn't causing the issue. She had a shunt series CT scan and also a the spinal MRI, and 24 EEG. We also checked her thyroid levels and just recently found out that it's not working properly. So damage to the Pituitary Gland is something that needs to be explored at this point. Our next step is to meet with Endocrinology. Her seizure activity is indeed UP. She had 4 last week that I watched, so I discussed with neurology that we are goin to admit her into the hospital (after school is over) for a full, week long EEG (with cameras) in hopes that they can catch these seizures on paper. She shouldn't be breaking through the meds at all. At times she's having up to 8 a week. It's not healthy for her at all and at this would to continue could cause damage to the brain. At this point, we still don't know a lot. We'll keep on moving, keep on pushing. It's annoying - but not at all life threatening so we'll go with it and see what goes happens. I'm sure it means different meds to the cocktail, but all in all, we've got this too. #teamdami #astrocytoma #epilepsy #hydrocephalus #POTS #SVT #pediatriccancer #gogold #hersheymedicalcenter #ftk #negu#nevergiveup #hope #strength
pediatriccancer - strength - astrocytoma - teamdami - epilepsy - pots - hydrocephalus - negu - gogold - nevergiveup - hersheymedicalcenter - svt - ftk - hope -
juliewilmes : Prayers and thoughts coming yalls way! ❤️
haileyelizabeth98 : Praying for you, Dami, and y'alls family! I just went through the same thing and it's got to be tough watching someone as little as her fight this! Dami is so strong♡
jmanziphoto : What an amazing little girl... keep smiling Dami!! and you too @melaniamphotog keep being such a strong momma, the world needs role models like you!! <3 prayers for days for all of you!!!!
joanibickleee : you all are an example of strength and faith... 💛💛💛💛💛
mamasang17 : We all continue to pray for Dami and your family. You are such an inspiration and have shown what strength and determination really look like. On the bad days, always remember how many support you in your fight.
melaniamphotog : Xoxox. We can never forget. 🔷🔷🔷🔷. We have a huge family filled with lots of love. Thank you, @mamasang17. 💛
victoria_heffelfinger - annaaa_elizabethhh - holden2flowers - danyell_lauren -
This Week Was Very Busy. So I Didn't Get To Give An Update On My Son's Surgery. However I Just Wanted To Thank My Followers Who Prayed For My Son & For Strength For My Family & I. People I Don't Even Know We're Praying & Sending Messages😘My Family & I So Appreciate The Prayers & Love. The Lord Heard All Of Our Prayers & He Did Just What I Knew He Would Do🙌. May The Lord Continue To Bless Us All🙏😊🙌 #PrayerWorks #Faith #ThankYou #hydromom #hydrowarrior #hydrocephalus
snickerdoodle87_ : 👏🙌
shanelle_life : 🙏🙏🙏🙏🙏
miss_lightskin - naturalbornleader - adimples - god_blessing_me_at_46 -
It's National Rare Day !! We love this Rare sweet guy ❤️ Kris has Dandy Walker Syndrome and Hydrocephalus . He is in school and loves it !! We are so blessed to have him in our life !! His rareness will never keep him from living an amazing life !!! www.GlobalGenes.org #careaboutrare #hydrocephalus #raredisease #jeansforgenes
cleaneating_sassy : What a cutie!!!
chrisehill : Thank you !!! And your Easton is precious too !! Thank you for posting this !!! ❤️
katyk_davis : Precious Baby Boy😍😍
katyk_davis - priester_1216 - heather__henderson - traveler_road -
man12derz - crazyartwolfyahoocom - jess.im -
💙 Today is national rare day!!! I love someone who is rare! Our little love Easton has p- agenesis of the corpus callosum & hydrocephalus ⚓️ He's an amazing little (almost 9 month old) who is trying to sit & loves his purée foods! ✨Show some love and support not only for Easton but all the other amazing little rare fighters out there✨ Share & Bring awareness.... _________________ #careaboutrare #hydrocephalus #raredisease #WRDD2015 #jeansforgenes
iluvkakes4u - green_glitter_beauty - farljes2 - zees_kitchen_adventures -
"Alone we are rare. Together we are strong." #SpreadTheWord #RareDiseaseDay2015 #RareDiseaseDay #February28th #Feb28 #CareAboutRare #Survivor #ILOVESomeoneWhoIsRARE #Awareness #ChiariStrong #NeverGiveUp #ChiariMalformation #syringomyelia #Syrinx #hydrocephalus #Brain #Nuerological #ChiariAwareness #Warrior #purpleRibbon #WeNeedaCure #Purple #invisibleillness #chronicillness #ACM #chronicpain
chronicpain - nuerological - february28th - warrior - nevergiveup - brain - careaboutrare - chiarimalformation - rarediseaseday2015 - chiariawareness - rarediseaseday - ilovesomeonewhoisrare - survivor - purpleribbon - invisibleillness - purple - chronicillness - syrinx - hydrocephalus - acm - chiaristrong - feb28 - syringomyelia - spreadtheword - weneedacure - awareness -
sal.landavazo : 👍 to me, that would be considered rare.. guess we have different opinions. Have a wonderful day.
danielledietz : that's exactly what rare is tho - about the numbers.... nothing about doctors.
sal.landavazo : Rare - not occurring very often.
danielledietz : exactly. it affects 1 to 2 MILLION... that's not very often? lol 232,000 cases of Breast cancer this year ... is breast cancer rare to you????
sal.landavazo : Not in my community. It is unheard of where I'm from. So to me, it must be pretty rare. Also, do you not understand how many people there are in the world? Like I said we all have our own opinions and interpretations. No need for you to be acting crazy. I'm grown and I'm not arguing about this. Goodbye.
danielledietz : just because it's not heard of doesn't mean it's RARE..... rare is ONLY about the NUMBERS. not if you heard about it or not
averysmommyyy : If you are one of the 1.2 million to those who love you it is "rare." Awareness and compassion is what I want to bring to the picture. @danielledietz
danielledietz : it's not rare to me or anyone around me... including my chiari expert surgeon.... awareness is GREAT to bring!!! just do it with accurate information
rosey088 - aba_dawn - chronic.chloe - carolinegilhen -
amy_booher - ambrygenetics - haeswellfies - feathercoffee -
Today is #RareDiseaseDay. Wear your #jeans today to raise #awareness for #rare diseases such as #hydrocephalus. Wear them for Jordan. #ilovesomeonewhoisrare #hydrocephalusawareness
ilovesomeonewhoisrare - hydrocephalusawareness - rare - hydrocephalus - rarediseaseday - jeans - awareness -
amy_booher : @dmcsaf hi J!! 💙⚓️ thanks for posting, Dustyn. I truly appreciate your friendship and sweet spirit. Hugs to you both from your Oregon hydro family!!
angel69kitty - fdwarriormom - jstein0109 - clouds_85 -
Do you think I'll mess her up by telling her that she is perfect everyday?? #gsdlife #10months #gettingsobig #blinddog #hydrocephalus #specialneedsdog #bestdog #cutedog #mysoulmutt
specialneedsdog - mysoulmutt - cutedog - hydrocephalus - gsdlife - gettingsobig - bestdog - 10months - blinddog -
bolainbali - remingtonsangrey - marissaxxcarol - cassiekreider -
Don't forget to wear your jeans! #mydaughterisrare #hydrocephalus #hydrobaby #hydrowarrior #hydrocephalusawareness #hydrokid #corticalvisualimpairment
raredisease - hydrocephalusawareness - hydrowarrior - mydaughterisrare - hydrobaby - hydrocephalus - corticalvisualimpairment - hydrokid -
junebugsmomma : #raredisease
amy_booher : @junebugsmomma thanks for posting, Lacey. And thanks for all your support and friendship the past couple years. Hugs to you and your little #hydrowarrior today, from sunny Oregon 💙⚓️
junebugsmomma : Thanks @amy_booher. It is nice to learn about hydrocephalus from an adult perspective, too. 😘
boopsie54 - jstein0109 - clouds_85 - e_borggie -
Dont judge a book by the cover and always be kind 💗 you never know the daily struggle in a persons life! This ones for the narrowminded people ✊ #rarediseaseday #iih #hydrocephalus #invisibleillness #raisingawareness #disability
spoonie_support - sian828 - rachyg7 - bhoulie -
bodacious_beauty27 - pinknpearlz - endia_wit_a_e - deaunna_rayy -
#nationalrarediseaseday #raredisease #hydrocephalus #hydrowarrior #brainsurgery #brainsurgeon #neurology #buffalogeneralhospital #neurosurgery #greysanatomy #drderekshepherd #neurosurgeon #shunt #nocure #rarediseaseday #hydrocephalusfacts #hydroheroes #phf #pediatrichydrocephalusfoundation #hydrocephalusassociation #hydrocephalusawareness
nationalrarediseaseday - raredisease - greysanatomy - rarediseaseday - hydrocephalusfacts - phf - drderekshepherd - neurosurgeon - neurology - hydrocephalusassociation - brainsurgeon - neurosurgery - nocure - buffalogeneralhospital - shunt - hydroheroes - hydrocephalus - brainsurgery - pediatrichydrocephalusfoundation - hydrocephalusawareness - hydrowarrior -
lexi_jo_110 - shinebrightlovelife - haeswellfies - betterthanu84 -
I am the face of a #RareDisease; not only one, but multiple. Not only are they rare, but #invisible. Who has heard of the word "#hydrocephalus?" Who can even pronounce "#PseudoTumorCerebri?" Anyone know what "#MenieresDisease" is? By looking at some pictures here, I "look" like a normal 24-year-old...in some cases, yes; but in others, I could only wish I could say so. Between having 30 #surgeries, 8 brain surgeries, 40+ spinal taps, NUMEROUS invasive #procedures, and spending over 25 weeks I'm the #hospital, it has done nothing but make me a #stronger woman and grow closer to #God all at the same time. The list of diagnoses goes on and on; but that just gives me a bigger reason to keep #fighting the good #fight! To have an amazing #boyfriend who #loves and #accepts every aspect of ME, shows who HE truly is; dropping everything to take me to the hospital without question, caring for me after all of my procedures and surgeries since I've known him, and isn't scared of what the #future holds for my #health. Without the love and #support of my #parents and rest of my #family and #friends, I'm pretty sure I wouldn't have been able to fight any longer when I was in a #coma and lost the ability to walk. Upon waking up from my 4th brain surgery, I was close to not being able to talk for over a year. By the grace of God, I have regained most of my #balance and can talk normal again--I've been #seizure free for over 2 years and can only pray that remains for the rest of my life. As I tear up being reminded of how #blessed I truly am--living, breathing, talking...I just ask that you all open your eyes and #hearts to ALL rare diseases and not judge anyone, as you never know the path they have conquered. I am a #warrior, I am an #overcomer, and I will continue to DREAM FIGHT BELIEVE! 💖 Rare Disease Day 2015 #DreamFightBelieve #RareDiseaseDay2015
warrior - family - raredisease - accepts - pseudotumorcerebri - friends - blessed - seizure - coma - menieresdisease - invisible - overcomer - dreamfightbelieve - procedures - rarediseaseday2015 - boyfriend - hearts - stronger - god - hospital - hydrocephalus - fighting - fight - future - parents - loves - health - balance - surgeries - support -
astoriamom : God bless you
rdevenuta : Fabulous!
haeswellfies - tessssaroni - meganannchowski - feathercoffee -
#aspynlindawitbeck #ilovesomeonerare #hydrowarrior #hydrocephalus #septoopticdysplasia #chroniclung #tubie #chiari #jeansforgenes #feb28
chiari - ilovesomeonerare - aspynlindawitbeck - tubie - feb28 - septoopticdysplasia - hydrocephalus - hydrowarrior - chroniclung - jeansforgenes -
blriehl : Where did you find this @aspyn_ridge ? I looked all over their website :/
aspyn_ridge : I follow them on Facebook. They posted offering to make one for anybody. @blriehl
fdwarriormom - sbruce8916 - mikestetson - globalgenes -
Hope anchors the soul. #nevergiveup because you never know who might be looking to you for strength. @andi_wollen #warrior #stayheartstrong #relentlesspursuit 💙⚓️
warrior - nevergiveup - hydrocephalus - relentlesspursuit - stayheartstrong - hydrowarrior - shuntlife -
ash.linds : My daughter is 5 years old and has had 7 brain surgeries/shunt revisions. Yesterday i let her look through your stuff and ask questions about "grown ups that are special too" and it really inspired her. Thank you for being so open and sharing with the world 💕
ash.linds : @amy_booher
junebugsmomma : ⚓️⚓️💙
amy_booher : @ash.linds your message seriously made my night. 💙⚓️ thank you for being a strong hydro momma, and I want you to know that I'm as inspired by your fight as you are by mine. Always believe, and #nevergiveup -- #shuntlife #hydrocephalus #stayheartstrong #relentlesspursuit 💙⚓️ hugs to your precious little #hydrowarrior ... And PS. It looks like we only live about 40 min apart. I'm in Salem. Small world.
amy_booher : @andi_wollen ❤️
amy_booher : @junebugsmomma 💙⚓️
shermann22 : So proud of you, strongest person I know!! #relentless
amy_booher : @shermann22 💙 thank you
jerembuss - vakur_82 - _musicophile - shermann22 -
Four Years Ago I Would Have Given Anything To Celebrate This Day. Witnessing My Daughter Continue To Beat #Encephalocele #ChiariMalformation & #Hydrocephalus On An Annual Basis Has Been Nothing Short Of A #Miracle . Happy 4th Birthday Gianna!!!
brianna_lasha : Aww! Happy Birthday Beautiful!!
vcostain : Happy Birthday Gianna!
markeking : What a cutie! Happy Birthday Gianna! 🎂
siasia925 : Happy Birthday Gianna!! 🎉🎉💗💗
kkbuch : Awesome. Happy birthday to your beautiful girl.
aseelaa : happy belated birthday sweet Gigi!
amy_booher : @proplayersolutions what a beauty!! Happy birthday, Gianna. Life is so amazing, and the human brain is so resilient. May your journey be blessed, sweet girl. 💙⚓️ #hydrowarrior #nevergiveup #relentlesspursuit
proplayersolutions : @amy_booher Thank you so very much!!!!
tia.pia - lsiriusl24 - toychestlex - vhtaylor61 -
Meet Cameron, aka Super Cam. Cameron is 15 months old. He recently start sitting and rolling off of his belly. He loves to be outdoors. He also loves to visit his grandma and grandpa. Peekaboo is his favorite game. When Cameron was born he wasn't crying and his mommy knew something was wrong. He was diagnosed with a very rare type of arteriovenus malformation in his brain called Vein of Galen that was causing congestive heart failure and he was rushed to a different hospital. At six days old, he had his first surgery. Since then he has been diagnosed with hydrocephalus and has right side hemiplegia and has now had a total of six surgeries. He truly is defining the word, "superhero". He also looks like a future rockstar. Cameron continues to have lots of therapies to help him progress. His mommy says, "We are so proud of him!! He inspires me everyday and has taught me not to take anything for granted. We cherish every moment we have with our superhero." You and your mommy inspire me too, Super Cam!! @ktpie4141 #pleaseseetherealme #supercam #veinofgalen #hemiplegia #hydrocephalus #superhero #morealikethandifferent
morealikethandifferent - superhero - veinofgalen - pleaseseetherealme - hemiplegia - hydrocephalus - supercam -
stevenleemusic : Yay!
unfancymama : What a fighter and what a cutie!!!!!
campshree : Hi Cam! 👍
mpw14 : What a cutie!
ktpie4141 : 💙
_noni03 : 💙🙏💙😄
journeyappstoreloren : If you're looking for something very heart warming, please read my last post :)
amy_booher : @ktpie4141 💙⚓️
aliciamouton - _ohheyitscourt - tessarose10 - i_rock_forever_and_ever -
dgutz4ever - whysoserioushk - heyitsbrookieg - bi_movement -
Hope 💙 love this bug more than anything 💞 #makennarene #mcmsyndrome #globalgenes #isupportmakenna #hydrowarrior #hydrocephalus #autism #loveher @globalgenes
loveher - isupportmakenna - globalgenes - hydrocephalus - mcmsyndrome - hydrowarrior - makennarene - autism -
aaren1022 : 💙💙💙
bi_movement : Please Support by following! We are dedicated in becoming a united front to educate autism acceptance and defy any negative stigmas placed. Through success stories we hope to change the views of all we can have a discrimination free future!
alexis_ruggles - 4manzanos - trekbill - jeyyoung -
Cisto colóide em paciente sintomático com 17 anos de idade. Tratamento cirúrgico por abordagem endoscópica através de orifício de trepanação pré-coronal. Realizada terceiroventriculostomia. Cisto colóide é uma lesão expansiva benigna rara localizada geralmente no interior dos ventrículos. O cisto colóide pode obstruir a comunicação dos ventrículos laterais com o terceiro ventrículo, impedindo a circulação e o escoamento do líquido cefalorraquidiano e provocando seu acúmulo, causando hidrocefalia. #DrAlexandreCruzeiro @DrCruzeiro #neurocirurgia #neurosurgery #neurologia #neurology #cisto #tumor #neuroendoscopia #neuroendoscopy #hydrocephalus #Saúde
neurocirurgia - neuroendoscopia - hydrocephalus - cisto - tumor - neurosurgery - neuroendoscopy - neurology - neurologia - saúde - dralexandrecruzeiro -
topgesto : Tudo pra um bom gestor em saúde se atualizar diariamente. Conheçam nosso BLOG. Sejam bem-vindos e divulguem suas atividades e trabalho em saúde em nossas mídias sociais: www.topgesto.com.br #saude #gestao #hospital #medico #dentista #fisioterapia #ortodontia #periodontia #cirurgia #cirurgiao #softwaressaude #softwaressaúde #fornecedoreshospitar #remédios #laboratório
pportodemelo - danielitomd85 - medson_dermatologia - vcneri -
my ms mary...i love her sooo!!! just want to share a few things n get some advice 1⃣ she only lays down when shes n bed, other than she constantly walks 2⃣ when she gets ready to lay down she'll growl & bite if touched 3⃣ a couple of times, due to my neglect, shes fallen down the stairs. she lands on her feet and seems unbothered. it breaks my heart tho 4⃣ she rolls her paws when she walks and walks on 3 legs sometimes but when i touch her she doesnt whince 5⃣ she loves to follow me and play 6⃣ she sleeps so long that i have to wake her up to potty and play i just want to make sure i can identify her declining...thanks guys #anyadvicewilldo
specialneeds - neurological - bg - specialneedsdog - advice - veterinary - hydrocephalus - brusselsgriffon - dogneurologicalissues - vet - anyadvicewilldo - petitbrabancon -
hannah.hales.2.rock : Don't not do anything. You'll regret not getting help. I did
dollthebaby : #brusselsgriffon #petitbrabancon #bg #neurological #dogneurologicalissues #specialneeds #specialneedsdog #advice #vet #veterinary #hydrocephalus
dollthebaby : @percocetqueen no prob huny thx for ur responses
floatisgriffon : Yes agree with a vet visit as will help give you peace of mind if she is checked out. They may suggest supplements if helpful. Let us know how you get on and like @hannah.hales.2.rock says don't leave it. Hope it all goes ok.💖💖💖
hannah.hales.2.rock : @floatisgriffon it's too easy to confuse natural decline and real risks especially if it's hard to come to terms with
floatisgriffon : @hannah.hales.2.rock Yes I totally agree!
klouklotz : :(try to get a new blood panel done for her. Some sound age and prior life related but you want to make sure. So sorry 🐾🐾😘🙆
isabella_n_beau : Only had experience with #2 and it might mean a habit she's formed or some pain that she's guarding. Learned a while ago if you see anything changing, seek your vet's help. Hope her paws/legs are ok. Hugs❤️
maikutty - dogdogann - luimama - theoneandonlyporpor -