Look who is standing on his own! Arshaan has a long way to go and yesterday he worked hard in PT. His hips and his knees are really tight and after walking on bent up legs for so long, all his muscles are getting a real work out! Jansen's is like working with putty! You put weight on the bones in the wrong direction, and it will bend causing more pain and discomfort. What some people take for granted, this guy works tirelessly towards. Every setback brings him down tenfold and he has to claw his way up with more resilience than before. It is so hard to watch and so hard to find words for. To stand unassisted with "manageable pain" is a goal he has worked for all year! And eventhough he stood for only a few mins before collapsing into our arms, it gave him hope for all that is possible. ❤ #raredisease #jansenswarriors #MyHero
Today was hard. Thanks everyone for your messages and prayers. We had to call it quits. We are going to regroup and look at it another day. Arshaan: "I'm trying my hardest not to act how I feel." And yes, we got some icecream. And the boys shared their secret handshake when things are hard. And i caught it. So not so secret anymore. We will get through.
#QuarantineDays
Arshaan had to do a biography and I guess with Covid, he didn't have many choices... so he chose to write about me. I have to admit.. I have been emotional lately, and this just opened the floodgates! I'm an ooey gooey mess of emotions right now. My boy hears and sees me. He knows even with everything happening in the world right now, I'm still pushing forward for a treatment. For him and his brother, and for others walking a similar path. He's always been such a precocious boy, and then he writes this, and I know he gets it. He gets me. And he gets the world of rare disease. And all is right once more. #MyHero #jansenswarriors #LoveBeingMom
When we can't go see our therapist, our therapist comes to see us! 😍 #covidlife #DiariesFromaPandemic
At the Orthotics office today getting fitted for AFOs. Hopefully, in a few weeks they should be able to stand again. The orthotist: "How many surgeries have you had little buddy?" Jahan: "Too darn many!" 🤣 These two. 😍
Featured
FB_IMG_1730068111517.jpg
Key Takeaways for the FDA from the Rare Disease Innovation Hub Meeting
IMG-20230918-WA0010.jpg
The Intersection of Identity, Culture, and Rare Disease: What it means to be "seen"?
Of Hope and Miracles
Of Hope and Miracles
download.jpg
Rare Disease - The Waiting Game
050vcdHQ.jpeg
Leadership and Disability
Enjoying the Sun
Reflections on 30 years of ADA
When Someone Questioned My Requests to Accommodate My Child's Disability
When Someone Questioned My Requests to Accommodate My Child's Disability

Laws alone cannot create justice for little kids facing unspeakable battles. Just people alone can bring justice in the corridors and behind closed classrooms where eyes can’t see.

When Your Medically Complex Child Asks 'Why Me?'
When Your Medically Complex Child Asks 'Why Me?'

But not all tough conversations lead to easy answers or neatly packaged solutions. This is especially true when dealing with rare disease.

I'm Not a Doctor, but That Doesn't Mean I'm Not an Expert on My Child's Condition
I'm Not a Doctor, but That Doesn't Mean I'm Not an Expert on My Child's Condition

I was three years old when my father pleaded with doctors: “My daughter’s bones are bending.” His words were ignored. After years of living in the dark and countless misdiagnoses, including polio and rickets, my parents had no choice but to problem-solve on their own. 

When Your Child With a Rare Disease Doesn’t Feel Brave
When Your Child With a Rare Disease Doesn’t Feel Brave

What if your child is not feeling so Brave? Why do we prize bravery as the ability not to feel afraid?