Jenna Bunnell

Team Sabina / Family-Led Giving Campaign

"Giving Tuesday is almost here and Team Bunnell is raising funds to impact the lives of children impacted by Skraban-Deardorff Syndrome, in honor of our sweet Sabina who was diagnosed with this rare genetic disorder at the age of 4. 

Persons affected by Skraban-Deardorff have only one working copy of the WDR26 gene. Because of the rarity of the disorder, there is still much to learn about this newly discovered syndrome, but some characteristics include seizures, developmental delay, and intellectual disability. 

With your support on Giving Tuesday, we are pushing closer to fund critical research to uncover how this gene impacts development and explore treatment and management options to improve their lives.

Our goal goes beyond donations; it’s about building awareness for this rare disease. By learning about SKDEAS, you’re helping us spread hope and understanding of children like Sabina.

Learn more about what your support will fund by visiting skdeas.org/research. Thank you for supporting Sabina and the entire SKDEAS community! ♥
"

  • $7,162

    Raised

  • $1,750

    Goal

  • 16

    Supporters

  • 3

    Days Remaining

Team Members

Recent Transactions

About

While everyday with Sabina is an absolute gift, to say that receiving her diagnosis in December of 2022 completely changed our lives, it would be an understatement.


As parents, you hope your child thrives in all capacities. Receiving a rare diagnosis forces you to adjust your definition of “thrive” as you fumble trying to adapt to your child’s new reality. We had always envisioned Sabina having a “normal” childhood and living many of the experiences we had as kids. We had to focus our energy on rethinking the milestones we would be working towards.


Over time, we began to settle into our new norm. Instead of just accepting Sabina’s diagnosis, we were able to celebrate it and see all that SKDEAS has actually given our family, rather than what it has taken from it. 


We couldn’t be more proud to have the kind of kid that wakes up with a smile on her face every single day. She may not speak but her actions speak more meaning than most words can begin to. 


We fully expect to continue to have our share of heartaches as we navigate the unknown. But we wouldn’t change Sabina if we could and are grateful for all the love and support we have received and continue to receive throughout her rare disease journey.