Stephanie M

raising 2 little humans | live life to the fullest | reach for the stars | you can accomplish anything

[SFGiants @SFGiants]

Earlier today, a large group of #SFGiants visited Family House San Francisco to spend time and play baseball with the the children 🧡

[Stephanie M @steph_madole]

@Lilacmess Oh no!!! I hope it passes quickly ! Thinking of you

[Stephanie M @steph_madole]

@Lilacmess Thank you!!! She inspires me every single day. So do people that are fighting just the way you are. Rare is hard.

[Stephanie M @steph_madole]

@Lilacmess My 9 year old daughter decided that she is so glad people don’t understand because to her that means they don’t have to struggle the way she does with Mg.She doesn’t want anyone to feel the way she does. It is invalidating but her perspective is beautiful.COVID put her in crisis

[Stephanie M @steph_madole]

#raredisease follow her journey! @RP_Organization @MyastheniaOrg @MrBeast raising awareness! #research #toomuchhospitaltime #timeforacure

[Autoinflammatory Awareness Month @AutoinflamMonth]

More illuminations and events are coming for International Autoinflammatory Awareness Month. Visit https://t.co/ukaEj9dtD0 to get all the locations,links to join events, webcams for lighting's, how to get involved, and more. #august4autoinflammatory #shine4autoinflammatory 🧡

[Stephanie M @steph_madole]

The difference @UCSFChildrens makes in our daughters life is immeasurable. The doctors, nurses, educators, social workers, administrators - all collectively help her have SO many phenomenal days outside the hospital& also allow her growth inpatient too! School being her favorite!

[Carolyn Jones @carolynjones100]

When patients are students, learning is vital to healing https://t.co/4jydj4eYoL via @edsource

[Carolyn Jones @carolynjones100]

When patients are students, learning is vital to healing https://t.co/4jydj4eYoL via @edsource

[UCSF Benioff SF @UCSFChildrens]

A bright spot in 8-year-old Elizabeth’s monthly treatment is Miss Erika, her teacher at our hospital school. The @SFUnified school provides structure, social connections & hope. “School becomes part of the healing process,” head teacher Julie Pollman says. https://t.co/5VpjpQVWzF

[UCSF Benioff SF @UCSFChildrens]

BREAKING: Our hospitals in #SF and Oakland are among the nation’s #BestHospitals for kids, according to @usnews! We rank No. 5 in the U.S. and best in California for neonatology and best in Northern California for pediatric cancer! https://t.co/Cdc0lAu45u

[Stephanie M @steph_madole]

@01sth02 @AmandaMoMorris Everything was complicated by her systemic Autoinflammatory disease &also her generalized Myasthenia Gravis. Her labs trended towards macrophage activation. After the initial discharge she was readmitted, again trending towards MAS. We are home now, progress is slow but positive!

[Stephanie M @steph_madole]

This is COVID for my 8 yr old immmunocompromised daughter w/ a rare disease #RelapsingPolychondritis & #MyastheniaGravis. She has MIS-C & macrophage activation syndrome from COVID. Just think of her when you decide the importance of how to navigate this pandemic @AmandaMoMorris

[Stephanie M @steph_madole]

@itsabbyyyyy @Facetious_Dem @AmandaMoMorris Hi! You are so incredibly kind! We are usually at mission bay but we are actually across the bay right now at UCSF Benioff Childrens Oakland!

[Stephanie M @steph_madole]

@Facetious_Dem @AmandaMoMorris I am Elizabeths mom. This is so difficult and also such an important time to bring awareness

[Stephanie M @steph_madole]

@AllergyKidsDoc As far as my understanding, it is due to her reaction of hives during the IVIg infusions. Allergy/immunology added cetirizine to her Pre meds (Benadryl / Tylenol) last admission and she had no reactions.

[Stephanie M @steph_madole]

@goodfor47906883 @sbernsteinmd No need, thanks. We have a great support system for our daughter. Just hope you can see the need to get vaccinated to help kids/people who are Immunocompromised like my daughter. Which is the point of #IHaveAPreexistingCondition

[Stephanie M @steph_madole]

@KatieLi23220554 @sbernsteinmd You are so far out of line, and your negativity is not received. My daughter is changing lives, she is changing the way #chonicillness is seen. She is the change this world needs. No need to respond. She proudly tells her own story.

[Stephanie M @steph_madole]

@halo_rh @sbernsteinmd Awe, thank you for the kind words! ❤️

[Stephanie M @steph_madole]

@frozenfldrinks @sbernsteinmd Appreciate your well wishes and kind words! How is your daughter!? Hope you guys are navigating this pandemic well 😘