rare disease parenting

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rare disease parenting
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Hi, my name is Jillian. I’m new to The Mighty and look forward to sharing about the journey we are on with our two children, both diagnosed with an ultra rare and life limiting genetic disease called ASMD.

#MightyTogether #ASMD #NiemannPickDisease #RareDiseaseParenting #SpecialNeedsParenting #asmdwarrior #rarediseasewarrior

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I sit alone and count the failures of my life. A child with severe disabilities = I didn’t grow him properly. Protecting his life from Covid = loss of my job and no income for 10 months and counting. Protecting one life = endangering the security/lives of 3 others. There was no choice to make; however there are so many consequences to fighting for his life and the safety of my family. Did I do the right thing by leaving work that day in June and telling them they had to take it seriously? Did I do the right thing throwing away my career? I’ve always chosen family first, this time was no different, but somehow the punishment doesn’t fit the crime. #RareDiseaseParenting #UltraRareDiseases #COVID19


Do you sometimes feel like you should have an honorary medical degree? #RareDisease #RareDiseases

Who else feels like we should be honorary medical degrees considering we know more than most doctors about our #RareDiseases? LOL but seriously, I know I feel like we should.

When was the last time you had to explain your #RareDisease to a medical professional?

#RareDisease #RareDiseaseParenting #rarediseasewarriors

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#CheckInWithMe Parents of kids with #RareDiseases

Let me know how you are doing! Life gets crazy busy caring for our kids that we often forget to check in with ourselves.

Personally, I am exhausted. Between my oldest daughter's schedule and making sure my youngest gets in PT, OT, and Speech Therapywith us at home in addition to her actual therapy appointments makes for a long day after work.

#tellushowyouaredoing #SpecialNeedsParenting #ParentAdvocacy #rarediseasewarriors #RareDiseaseParenting

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What do you do when doctors say no more treatment; just sit back & wait & hope for scientific or medical breakthroughs? What do you tell your child?

My questions came out in rapid succession.
“What is your end game? What is your discharge plan?
As my daughter’s surgeon, I am asking, what can be done to help with her pain? When say that you cannot do anymore surgery, I hear something different.”
All I hear is that she will continue to live a life of pain, with relief in sight. Is this it?
He looked to the floor with his sad eyes and said there’s really nothing more that can be done. Not by him, not by anybody. He said that the only thing we can do is wait and hope that someone, in the near future will come up with something to help. #RareDisease #ChronicPain #RareDiseaseParenting