Reyna's CDKL5 Cure

03/22/2026

💔🕯️

A mom’s request.. to honor the memory of her son.
Very sad to learn about 12-year old Caio (Germany) who gained his wings.
Please keep his family in your thoughts and prayers.

03/20/2026

It was a pleasant surprise, Reyna’s music teacher said she saw us on the front page of the newspaper.. We did this interview but didn’t know it got published already. This story talks about our village. Reyna’s P*P, her vision teacher, her school teacher, and now Reyna’s big sister. No we didn’t give birth another child or have an illegitimate one.. She’s so bored of us we had to find her a big sister Nyesha to hang out with..

Thank you Tri-City Voice for featuring our journey. Please follow them.

Tri City Voice - 03/17/2026

03/19/2026

Hey 👋 how all is well. Wanna look trendy this summer? Carry this tote of hope. Gets CDKL5 Gene Therapy to the next level. Thank you 🙏

https://givebutter.com/this-bag-carries-hope-qynidg

03/05/2026

Sharing this article on the Sartorius blog about our journey to advance CDKL5 Gene Therapy. Time is critical — we’re focused on moving to the clinic as quickly and safely as possible. https://www.sartorius.com/en/company/newsroom/blog/how-an-ambitious-dad-and-sartorius-aim-to-advance-gene-therapy-for-cdkl5--1800592

For eight-year-old Reyna, a rare mutation means daily seizures and developmental challenges. Her father, Jainu Jogani, refused to wait for a cure.

02/28/2026

While the world celebrates Rare Disease Day, this is what reality of our lives is! Reyna’s buddy - Neevan (7-year old) gained his wings unexpectedly. We were celebrating successful kidney transplant, planning CRISPR (gene) editing, making weekend plans, and here we are. While everything exists to help save lives and improve the quality of life - there is a huge gap in reality and urgency in treatment. Neevu, words in this post can’t describe how we miss you. Until we meet again buddy - fly high.

02/17/2026

A devastating loss for Josiah’s family and the CDKL5 community 💔💔💔

Sweet Josiah gained his wings last night. His family and the CDKL5 community are devastated. If you feel inclined, please donate to their fundraising page to help with expenses. My heart goes out to his entire family💔💔😭😭😭😭😭🙏🙏🙏💔💔💔
https://gofund.me/bb3d2adfd

02/13/2026

01/26/2026

Please keep the family in your prayers and thoughts. 🙏

Sending lots of strength and support to little Jimena’s (age 10) family in Spain and the entire CDKL5 community for this devastating loss

12/13/2025

Reyu’s friend Margot from NAPA Center gained her angel wings today. We will miss her smiling face 💔💔💔 please keep her family in your prayers 🙏

12/04/2025

Dad usually dresses Reyna in the morning — it’s part of our daily routine. But today, for some reason, Dad was busy, so Mom was getting Rey ready for her NAPA Therapy intensive here in Boston. Rey looked in his direction and loudly summoned, “Jainuuuuuu!” Just like that, he dropped everything he was doing, came over, and got her ready. Reyna definitely has her dad wrapped around her finger..

It’s amazing to see how much better Reyna has gotten at communicating her needs. And it’s not just with her close circle — everyone seems to understand her now. A perfect example was during our recent visit to Boston Children’s Hospital, where she said “all done” loud and clear, and everyone around her understood it and felt compelled to end the appointment… haha.

11/26/2025

A very happy thanksgiving to all from Reyu and us ❤️