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maddycristina

Living Life To The Fullest Fighting a shitty terminal illness#curecf💜2 Amazing Big Sisters👭I'm a Disney Princess💖 Mermaids and the ocean rule🐳🐠Follow our fun on snap👻 loopyliz75 http://fightcf.cff.org/site/TR/GreatStrides/111_San_Diego_San_Diego?team_id=69777&pg=team&fr_id=6917
3,260 posts
2,534 followers
2,314 following
maddycristina

@maddycristina

Living Life To The Fullest
Thanks so much to the best team of supporters for coming out and walking for more tomorrow’s! It was a great day and loved getting to meet Heather and Sawyer in person finally🎉🎉 And thanks to Gary for the best T-Shirts so grateful, everyone loved them so much and your very generous donation to Maddy’s mission for a cure! We raised lots and placed in the top 10 teams because of all of you who supported Maddy even if you’ve never met her💜 
Can’t wait till next May when we will do it all again and get bigger and bigger each year! Please try to join us next May!! Plan now trip to Cali if you don’t live here 😃
#maddysmissionforacure #curecysticfibrosis #moonlightbeach #cffsandiego #curecf #greatstrides
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#starwars #darthvader #stormtrooper #disneyside #theforcebewithyou #cysticfibrosisawareness #fucf #raiseawareness #cffighter #cfsucks #disneygram #moonlightbeach #sandiego #temecula #sandiegokids #radyschildrenshospital #cfirl
3 35 4 hours ago
Thanks so much to the best team of supporters for coming out and walking for more tomorrow’s! it was a great day and loved getting to meet heather and sawyer in person finally🎉🎉 and thanks to gary for the best t-shirts so grateful, everyone loved them so much and your very generous donation to maddy’s mission for a cure! we raised lots and placed in the top 10 teams because of all of you who supported maddy even if you’ve never met her💜
can’t wait till next may when we will do it all again and get bigger and bigger each year! please try to join us next may!! plan now trip to cali if you don’t live here 😃
#maddysmissionforacure #curecysticfibrosis #moonlightbeach #cffsandiego #curecf #greatstrides .
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#starwars #darthvader #stormtrooper #disneyside #theforcebewithyou #cysticfibrosisawareness #fucf #raiseawareness #cffighter #cfsucks #disneygram #moonlightbeach #sandiego #temecula #sandiegokids #radyschildrenshospital #cfirl
maddycristina

@maddycristina

Living Life To The Fullest
“Life is too short so love the one you got” Words to live by for sure! Tomorrow we will walk for more tomorrow’s for people living with Cystic Fibrosis! Please consider walking with us at 10am tomorrow at Moonlight Beach. Donations go directly to the Cystic Fibrosis Foundation for funding for new drugs to help slow down the disease progression. Cystic Fibrosis is a terminal illness and all we want is a cure for all💜 walk info in my bio. Thank you all so much who have donated it is so appreciated we are very grateful for your generous support of our little Maddy.
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#sublime #longbeach #lbgtpride #longbeachpride #temecula #raiseawareness #cysticfibrosis #childrenofig #sublimemural #thelbc #losangeles #cirecysticfibrosis #maddyneedsacure #fucf #maddysmissionforacure #moonlightbeach #sandiego #greatstrides #teamshirts #instagood #instagram #donatelife #cfirl #cfprincess #cfmermaid #awesomeshirts # lbpride #awareness #cfblows #cffighter
1 49 Yesterday
“life is too short so love the one you got” words to live by for sure! tomorrow we will walk for more tomorrow’s for people living with cystic fibrosis! please consider walking with us at 10am tomorrow at moonlight beach. donations go directly to the cystic fibrosis foundation for funding for new drugs to help slow down the disease progression. cystic fibrosis is a terminal illness and all we want is a cure for all💜 walk info in my bio. thank you all so much who have donated it is so appreciated we are very grateful for your generous support of our little maddy.
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#sublime #longbeach #lbgtpride #longbeachpride #temecula #raiseawareness #cysticfibrosis #childrenofig #sublimemural #thelbc #losangeles #cirecysticfibrosis #maddyneedsacure #fucf #maddysmissionforacure #moonlightbeach #sandiego #greatstrides #teamshirts #instagood #instagram #donatelife #cfirl #cfprincess #cfmermaid #awesomeshirts # lbpride #awareness #cfblows #cffighter
maddycristina

@maddycristina

Living Life To The Fullest
Let’s talk Genetics! It takes two mutations to have CF one from mom and one from dad. Maddy has a very rare mutation combo making her the only one in the world😱 We did a genetic/dna sequencing through @ambrygenetics . We found out that Maddy has a super rare class 1 mutation that only 3 others have and they are all related in South Germany 🇩🇪. We’ve been told these are possible cousins of either Ricardo Maddy’s dad or myself. These are Maddy’s mutations  c1210-2a>c  and G542x. We’ve also been told these are severe disease causing mutations but besides Maddy’s long 4 months in the nicu she’s never been hospitalized again. When she was a baby we decided to relocate to Cali near San Diego we researched air quality, ocean breeze, allergens. We believe our move has contributed to Maddy’s quality of life and we are so happy she’s doing so well despite what we’ve been told. Maddy does have 2 class 1 mutations and funding for a possible drug for the 10% of people worldwide with rare mutations is so very important. Please consider a donation and walk with us this Sunday in San Diego! Link is in my bio. 
#cysticfibrosisawareness #cysticfibrosis .
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#cfwarrior #cfirl #curecf #instagram #oceanside #childrenofig #kids_of_our_world #instagood #curecf #fucf #g542x #temecula #raiseawareness #cffsandiego #cfsucks #spectacular_kidz #children_in_gram #chronicillness #childrenof_instagram #sc_theme280
4 96 4 days ago
Let’s talk genetics! it takes two mutations to have cf one from mom and one from dad. maddy has a very rare mutation combo making her the only one in the world😱 we did a genetic/dna sequencing through @ambrygenetics . we found out that maddy has a super rare class 1 mutation that only 3 others have and they are all related in south germany 🇩🇪. we’ve been told these are possible cousins of either ricardo maddy’s dad or myself. these are maddy’s mutations c1210-2a>c and g542x. we’ve also been told these are severe disease causing mutations but besides maddy’s long 4 months in the nicu she’s never been hospitalized again. when she was a baby we decided to relocate to cali near san diego we researched air quality, ocean breeze, allergens. we believe our move has contributed to maddy’s quality of life and we are so happy she’s doing so well despite what we’ve been told. maddy does have 2 class 1 mutations and funding for a possible drug for the 10% of people worldwide with rare mutations is so very important. please consider a donation and walk with us this sunday in san diego! link is in my bio.
#cysticfibrosisawareness #cysticfibrosis .
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#cfwarrior #cfirl #curecf #instagram #oceanside #childrenofig #kids_of_our_world #instagood #curecf #fucf #g542x #temecula #raiseawareness #cffsandiego #cfsucks #spectacular_kidz #children_in_gram #chronicillness #childrenof_instagram #sc_theme280
maddycristina

@maddycristina

Living Life To The Fullest
Maddy’s walk is less than a week away!  Thanks to everyone who has donated! We are in the top 10 and that is so fantastic, couldn’t of done it without all who contributed 💜💜
Most you all know Maddy loves being a mermaid 🧜‍♀️ Also people with cf are incredibly salty and require lots of daily salt to their diet. They also do amazing going to the beach daily because the salt in the air is very beneficial to breathe in daily. They also have a breathing treatment that is bottled salt (7% saline) that is done through the machine 2 times a day it replicates breathing in the salty air. Also every kiss to a person with cf is always salty but always the best 💋 So this is our last Mermaid Monday before we walk and if you’d like to walk or contribute to money towards research for a cure. All funds go directly to the @cf_foundation through my link in my bio. Remember Maddy is in that 10% of people that have no special drug for to help prolong life and reduce everyday cf symptoms. Without donations she may never get the chance on a miracle pill that she truly deserves 💜#curecysticfibrosis 
#cfmermaid
#cfawarenessmonth 
#salty
#mermaidmonday
#mermaidsarereal
#cysticfibrosis 
#terminalillness 
#cfwarrior 
#cfirl 
#cffighter 
#donatelife 
#mermaid
#temecula 
#encinitas 
#moonlightbeach 
#sandiego 
#photography 
#kidsfightingbattles 
#weneedacure 
#fucf
#RoleModelMonday
4 109 6 days ago
Maddy’s walk is less than a week away! thanks to everyone who has donated! we are in the top 10 and that is so fantastic, couldn’t of done it without all who contributed 💜💜
most you all know maddy loves being a mermaid 🧜‍♀️ also people with cf are incredibly salty and require lots of daily salt to their diet. they also do amazing going to the beach daily because the salt in the air is very beneficial to breathe in daily. they also have a breathing treatment that is bottled salt (7% saline) that is done through the machine 2 times a day it replicates breathing in the salty air. also every kiss to a person with cf is always salty but always the best 💋 so this is our last mermaid monday before we walk and if you’d like to walk or contribute to money towards research for a cure. all funds go directly to the @cf_foundation through my link in my bio. remember maddy is in that 10% of people that have no special drug for to help prolong life and reduce everyday cf symptoms. without donations she may never get the chance on a miracle pill that she truly deserves 💜#curecysticfibrosis
#cfmermaid #cfawarenessmonth
#salty #mermaidmonday #mermaidsarereal #cysticfibrosis
#terminalillness
#cfwarrior
#cfirl
#cffighter
#donatelife
#mermaid #temecula
#encinitas
#moonlightbeach
#sandiego
#photography
#kidsfightingbattles
#weneedacure
#fucf #rolemodelmonday
maddycristina

@maddycristina

Living Life To The Fullest
Maddy has been suffering from growing pains! She missed school today because she was up most the night with bad leg pain. I’ve never dealt with this before. Any advice? How long are the pains? She has her big surfing event Saturday and she was so excited. Hoping she feels better soon. Anyone who has dealt with this please let me know. She said is it because I have CF? I don’t think it is honestly from what I have read about it seems common in ages 5-10.
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#legpains #growingpains #cfirl #clarkythecat #clarkthecat #temecula #catsandkids #catsofinstagram #instacat #gorgeouscat #fatcat #kidsandpets #kidsleeping #kirrygram #cfawarenessmonth #cysticfibrosis #invisibleillness #terminalillness #weneedacure  #cfsucks #
19 80 2 weeks ago
Maddy has been suffering from growing pains! she missed school today because she was up most the night with bad leg pain. i’ve never dealt with this before. any advice? how long are the pains? she has her big surfing event saturday and she was so excited. hoping she feels better soon. anyone who has dealt with this please let me know. she said is it because i have cf? i don’t think it is honestly from what i have read about it seems common in ages 5-10.
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#legpains #growingpains #cfirl #clarkythecat #clarkthecat #temecula #catsandkids #catsofinstagram #instacat #gorgeouscat #fatcat #kidsandpets #kidsleeping #kirrygram #cfawarenessmonth #cysticfibrosis #invisibleillness #terminalillness #weneedacure #cfsucks #
maddycristina

@maddycristina

Living Life To The Fullest
When I look back at this photo and think of all the things running through my head. All the things the Doctors were saying, all the times she would scream in pain from needles after needles, tubes down her throat, pic line coming from her scull. It was all new and it was so scary. Why did our daughter have to suffer like this? Why did she have to have two surgeries and loose a 1/3 of her intestines? Why did they find a large mass on her liver, Why do I have to leave her every night for 4 months? And during all this confusion the hospital billing staff came in and ask how we plan on paying our bills? No remorse while I’m sitting there looking at my child suffer all they cared about is how we were going to pay them?? I’ll never forget the day, I started crying and thinking of my older girls and how their future may never be the same because of all this! Maddy’s hospital bills came to 4.5 million dollars and we paid and still do lots per month for top notch ppo heath care and till this day we get 0 help from the state. I’ve tried but we will never qualify because we both work. It makes absolutely no sense why a hard working family has to have medical bills for life and pay so much even to go to the damn clinic when others are lucky enough to have full coverage and no out of pocket expenses  but can’t work because then they won’t get any benefits. The system is so messed up and it’s so frustrating. However I am grateful that today she is doing way beyond what the Dr’s predictions were and moving to a place we knew she would do amazing. However we need healthcare to be available for everyone at a low cost and if social security disability gives one kid with CF diagnosis all people with cf should qualify and it should not be based on parents income it should be based on the terminal illness your child has. #cfawarenessmonth Consider walking with us May 20th or even a $5 donation link in bio
#weneedacure #g542x #genticdisease #cysticfibrosis #cfblows #nicu #nicugraduate #babymaddy #cfsucks #cfwarrior #sandiego #temecula #austin #invisibleillness #terminalillness #heathcareforall #curecf #donate #greatstrides #geneticmutation #cfirl #cfprincess #cysticfibrosisawareness
4 73 2 weeks ago
When i look back at this photo and think of all the things running through my head. all the things the doctors were saying, all the times she would scream in pain from needles after needles, tubes down her throat, pic line coming from her scull. it was all new and it was so scary. why did our daughter have to suffer like this? why did she have to have two surgeries and loose a 1/3 of her intestines? why did they find a large mass on her liver, why do i have to leave her every night for 4 months? and during all this confusion the hospital billing staff came in and ask how we plan on paying our bills? no remorse while i’m sitting there looking at my child suffer all they cared about is how we were going to pay them?? i’ll never forget the day, i started crying and thinking of my older girls and how their future may never be the same because of all this! maddy’s hospital bills came to 4.5 million dollars and we paid and still do lots per month for top notch ppo heath care and till this day we get 0 help from the state. i’ve tried but we will never qualify because we both work. it makes absolutely no sense why a hard working family has to have medical bills for life and pay so much even to go to the d**n clinic when others are lucky enough to have full coverage and no out of pocket expenses but can’t work because then they won’t get any benefits. the system is so messed up and it’s so frustrating. however i am grateful that today she is doing way beyond what the dr’s predictions were and moving to a place we knew she would do amazing. however we need healthcare to be available for everyone at a low cost and if social security disability gives one kid with cf diagnosis all people with cf should qualify and it should not be based on parents income it should be based on the terminal illness your child has. #cfawarenessmonth consider walking with us may 20th or even a $5 donation link in bio
#weneedacure #g542x #genticdisease #cysticfibrosis #cfblows #nicu #nicugraduate #babymaddy #cfsucks #cfwarrior #sandiego #temecula #austin #invisibleillness #terminalillness #heathcareforall #curecf #donate #greatstrides #geneticmutation #cfirl #cfprincess #cysticfibrosisawareness
maddycristina

@maddycristina

Living Life To The Fullest
Did you know that people with CF shouldn’t be around each other, there is a 6 foot rule. So Maddy has had some meet ups but she always has to keep a mask on and it’s also important to know if one another are culturing anything too. This is a perfect distance and Delaney is young so Maddy had to keep a mask on but D was to little at the time to get that. Two warrior fighting the same battle and need a cure💜
#cfawareness #cfawarenessmonth .
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#cfwarrior #cfirl #cfprincess #cflife #cffighter #curecysticfibrosis #fuck #fuckyoucf #cf #💜 #curecf #fighters #terminalillness #chronicillness #invisibleillness #kids_of_our_world #childrenof_instagram
0 55 3 weeks ago
Did you know that people with cf shouldn’t be around each other, there is a 6 foot rule. so maddy has had some meet ups but she always has to keep a mask on and it’s also important to know if one another are culturing anything too. this is a perfect distance and delaney is young so maddy had to keep a mask on but d was to little at the time to get that. two warrior fighting the same battle and need a cure💜
#cfawareness #cfawarenessmonth .
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#cfwarrior #cfirl #cfprincess #cflife #cffighter #curecysticfibrosis #f**k #fuckyoucf #cf #💜 #curecf #fighters #terminalillness #chronicillness #invisibleillness #kids_of_our_world #childrenof_instagram