February 29, 2024
1 Year +363
It’s Rare Disease Day! A zebra is used to represent rare diseases. I remember when I first learned how “rare” Tate was. I thought it would be helpful. I thought it would keep people interested, leading to answers. I didn’t realize it would make an uphill climb more difficult. We have a great team. But rare is isolating and hard. It leads to anything but answers.
A little flashback of the last two years. The end of ablation week almost two years ago. We had no idea the difficulty that was yet to come; A year post transplant during an admission, unexpectedly showing more CNS inflammation and now. Hair and a smile makes things look much sunnier.
I had a great appointment yesterday with a rare disease geneticist from Mayo. Tate has a great geneticist here at Children’s that the Mayo geneticist will also partner with moving forward. It will take months to work through this next series of testing. I asked her if she’d ever worked with someone like Tate. MT8. Inflammatory but not syndrome. She said “No. It’s just too rare.” Tate is God designed. Special in every way.