Reyna's CDKL5 Cure

09/07/2026

Looking back at this video is bittersweet. Reyna worked so hard to learn this, but because of regression, she can no longer do it today.

No matter how determined she is or how many hours of therapy she puts in, as her body grows, regaining lost skills becomes incredibly challenging. Until we address the root cause—the missing CDKL5 gene—therapy can only do so much.

So we keep adapting, cheering her on, and working against time towards gene therapy so that one day our children won’t have to lose the skills they fought so hard to gain.

09/05/2026

Mumma says I need to learn AI. So might as well have some fun with it.

06/06/2026

Reyna’s smile says it all. 💜

We’re grateful for the care, kindness, and community that continue to support her journey.

https://lookinside.kaiserpermanente.org/blog/2026/06/04/compassionate-care-behind-one-childs-big-smile/

Despite living with a rare genetic disorder, an 8-year-old lives life to the fullest.

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