khrystalkdavis khrystalkdavis

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Khrystal K Davis πŸ™πŸ»HunterπŸ™πŸ»  Mom to Hunter, sweet 5yo πŸ‘¦πŸΌwith Spinal Muscular Atrophy, like ALS in babies, a rare & terminal disease. πŸ“š Author πŸ“š Speaker, Coach & Patient Advocate

http://bit.ly/SMAnewbornscreening

Happy Cinco De Mayo!!:):) Hunter received life-saving treatments in Mexico for nearly 5 years. We are forever grateful to his Medical team in Mexico & Gene Tools:):) Viva Mexico πŸ‡²πŸ‡½ β€οΈπŸŒΆπŸ‡²πŸ‡½β€οΈπŸŒΆπŸ‡²πŸ‡½β€οΈπŸŒΆπŸ‡²πŸ‡½β€οΈπŸŒΆπŸ‡²πŸ‡½ #hunterhashope #huntforacure #spinalmuscularatrophy #raredisease #cincodemayo #vivamexico #spinraza #biogen #patientadvocate #avexis #smafoundation #smacure

May the Fourth be with you!!:):) Hunter's using his Jedi Force to promote Rare Disease Awareness:):) We're thinking of Benedict Coulter & the rest of the Baby's Brilliant Family today. May the Force be with you all!!:):) @babysbrilliant πŸ’™πŸ’™πŸ’™πŸ’™πŸ’™πŸ’™πŸ’™πŸ’™πŸ’™πŸ’™πŸ’™πŸ’™ #hunterhashope #huntforacure #maythe4th #mayrheforcebewithyou #spinalmuscularatrophy #raredisease #spinraza #biogen #patientadvocate #smafoundation #smacure #avexis #babysbrilliant

It's Hunter's "If You Mustache Monday" to promote Rare Disease Awareness.
If You Mustache, 35% of the deaths in the first year of life are caused by rare diseases.
Please support the addition of rare diseases like Spinal Muscular Atrophy to newborn screening panels. πŸ’™πŸ’šπŸ’™πŸ’šπŸ’™πŸ’šπŸ’™πŸ’šπŸ’™πŸ’šπŸ’™πŸ’š #hunterhashope #huntforacure #spinalmuscularatrophy #raredisease #newbornscreening #spinraza #biogen #patientadvocate #avexis #smafoundation #smacure

It's Hunter's "If You Mustache Monday!" If You Mustache, in the US a Disease is rare if it affects fewer than 200,000 individuals. πŸ’™πŸ’šπŸ’™πŸ’šπŸ’™πŸ’šπŸ’™πŸ’šπŸ’™πŸ’šπŸ’™πŸ’š #hunterhashope #huntforacure #spinalmuscularatrophy #raredisease #biogen #spinraza #patientadvocate #smacure #avexis #smafoundation

It's Hunter's If You Mustache Monday to promote Spinal Muscular Atrophy Awareness.

If You Mustache, 1 in 40 unknowingly carries the gene responsible for Spinal Muscular Atrophy. Could you be a carrier? πŸ’™πŸ’šπŸ’™πŸ’šπŸ’™πŸ’šπŸ’™πŸ’šπŸ’™πŸ’šπŸ’™πŸ’š #hunterhashope #huntforacure #raredisease #spinalmuscularatrophy #biogen #spinraza #patientadvocate #avexis #smacure

Happy Easter ❀️🐰❀️ We wish you a happy & healthy Easter filled with hope 😊

God Bless β€οΈπŸ™πŸ»β€οΈ ❀️🐰❀️🐰🐰❀️🐰❀️🐰❀️🐰❀️ #hunterhashope #huntforacure #happyeaster #spinalmuscularatrophy #raredisease #spinraza #avexis #patientadvocate #biogen

Today is huge!!:):) We've always provided Hunter's care at home without any outside help. Today we're interviewing a nurse. This is to provide Hunter more care. We believe this will help him improve.

It's a big step to open our door to let others help care for Sweet Hunter!!:):) πŸ’™πŸ’šπŸ’™πŸ’šπŸ’™πŸ’šπŸ’™πŸ’šπŸ’™πŸ’šπŸ’™πŸ’š #hunterhashope #huntforacure #spinalmuscularatrophy #raredisease #spinraza #nurse #biogen #patientadvocate #avexis #smacure #bigstep

A diagnosis is on paper, not on a person!!:):) Hunter & others are much more than a diagnosis. πŸ’šπŸ’™πŸ’šπŸ’™πŸ’šπŸ’™πŸ’šπŸ’™πŸ’šπŸ’™πŸ’šπŸ’™ #hunterhashope #huntforacure #spinalmuscularatrophy #beyondthediagnosis #patientadvocate #spinraza #biogen #smacure #avexis #raredisease

It's Hunter's 'If You Mustache Monday' to help promote Rare Disease Awareness.
If You Mustache, Rare Diseases impact more people than AIDS & cancer combined.

Sorry we're SO late, but we're still trying to get Hunter better. πŸ’™πŸ’šπŸ’™πŸ’šπŸ’™πŸ’šπŸ’™πŸ’šπŸ’™πŸ’šπŸ’™πŸ’š #hunterhashope #huntforacure #raredisease #spinalmuscularatrophy #biogen #spinraza #patientadvocate #avexis #smacure #smafoundation

Sweet Hunter's not feeling well today, and wasn't able to come off bipap without his heart rate shooting way up. I stepped up his respiratory treatment, and hope and pray this will pass quickly.

Illnesses always scare us with Hunter, but we're so grateful he's stronger from his Spinraza treatments.

Makes us even more committed to securing access to Spinraza treatments for the entire SMA community. Everyone deserves to be stronger. β€οΈπŸ’™πŸ’šβ€οΈπŸ’™πŸ’šβ€οΈπŸ’™πŸ’šβ€οΈπŸ’™πŸ’š #hunterhashope #huntforacure #feelbetter #spinalmuscularatrophy #biogen #spinraza #patientadvocate #avexis #accessforall

It's Hunter's 'If You Mustache Monday.' If you Mustache, half of all rare diseases affect children like Hunter. Please support Rare Disease Awareness & Research!!:):) β€οΈπŸ€β€οΈπŸ€β€οΈπŸ€β€οΈπŸ€β€οΈπŸ€β€οΈπŸ€ #hunterhashope #huntforacure #mustachemonday #spinalmuscularatrophy #raredisease #spinraza #biogen #smacure #avexis

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