Looking forward to reading this!!

Congratulations, Lucia!

For my birthday, please call your representatives and senators. Let them know you are concerned about your friends and loved ones who have cancer or rare diseases getting treatments and services they so desperately need. Science saves lives. 7/7

My concerns are not unique. Everyone who has a child with a rare diseases is concerned about research and healthcare now more than ever. Anyone who had cancer and beat it due to amazing treatments should be concerned that medical research is in a holding pattern and others won’t get the same. 6/n

I worry daily that Grayson will have a seizure that lands him in the hospital. At night, I listen to the sound of his breathing for any change that happens with a seizure. I’m concerned he’s outgrowing his equipment, my ability to carry him, and we’ll need shortly to modify our house or move. 5/n

I’m concerned about potential cuts to Medicaid. Medicaid coverage for Grayson pays for diapers, wipes, G-tube food and supplies, meds, wheelchair, leg braces and gait trainer (walker). Without services, meds, equipment, and after school care will be unaffordable. 4/n

I’m concerned that without a job I won’t have affordable healthcare. 3/n

I concerned I’ll lose my job since it depends on NIH funding; I’m submitting grants but NIH reviews and funding decisions currently aren’t happening. Plus, the research we are doing into Grayson’s rare disease will stop (no one else is working on it) and he will lose the chance for a treatment. 2/n

Done! I was a little startled when a human answered.

Great to see the completed work. Looking forward to reading it!

Can you add me, please?

Add me please!

Please add me!