Tags » Rare Disease

Induction Into the World of the Chronically Ill

As a young child, I was super active. I’ve dealt with asthma and allergies since before I could remember so it was never a big deal, nor did it ever hold me back. 1,941 more words

Chronic Illness

Undiagnosed Childrens' Day Instagram Challenge

Day 23 “A Challenge”

Right so I’m a bit behind!  Anyway last night I was getting ready for my twice weekly 5K run.  I’m not a “natural athletic type” I wish I was, I’m more your walking, horse riding, being outdoors type…. 63 more words

HI Achiever - Dr. Jason Goldberg, UTMB

Texas Children’s Hospital has been instrumental in the diagnosis and treatment of Jackson’s Hyperinsulinism but our journey started before we landed on their doorstep.

When Jackson had his first seizure and starting acting abnormal, we went to our local emergency room. 684 more words


Happy Birthday Stella!!

2 Years Old
My darling Stella Li~

Today is a special day. Today is your birthday.
You are officially 2 years old today. Your life on Earth ended 1 day shy of 19 months old, but you are officially 2 years old to me. 655 more words

Liver Transplant

4 Months Down...

Life with transplant is challenging no matter how much someone tries to prepare themselves for it.

I’m a little over 4 months post transplant now, & while I am definitely doing well (knock wood) not every day is as easy at it may appear. 500 more words

Blog Entries

Dad Photoshops Toddler Into Dangerous Situations For Awareness [PICS]

This dad, Stephen Crowley, is pretty cool, and the pictures have been giving a lot of his family, and a ton of us as viewers, a pretty good scare. 233 more words


When there’s no end in sight

I struggle a lot knowing that I will live with my rare diseases for the rest of my life, while there are good days and stable periods – there will continue to be complications and potentially new things that are linked to FAP that will pop up. 880 more words