June 2021 Updates

Seizures

Unfortunately, Stella continues to suffer from seizures daily. She has a break one day, and then the next she will have a few. But on average they are every day and last about 7 minutes each. Trying to find a solution to control her seizures continues to be our main focus as this little girl needs and deserves a real break! We continue to play with medicines to find her some relief… but we have not been able to find anything that works. We keep a visual chart of Stella’s seizures updated weekly on the home page (just scroll down a tiny bit).

Development

Stella has shown us how to truly appreciate every little milestone and advancement—from merely looking at a toy to repeating the “m” sound after you model it for her. At now 18-months, she is recently a non-stop roly-poly where we can’t leave her alone anymore, and she is trying her hardest to sit-up more and more every day! She continues to give us hope that more independent mobility is in her future and we will continue to provide her with every resource to give her the best chances for that! She is still one busy little lady with 2-3 therapies every day consisting of physical therapy, occupational therapy, speech therapy, Dynamic Movement Intervention (DMI) therapy, Feldenkrais therapy, Early Start Education therapy, and coming soon, vision therapy and Hippotherapy! 

Research, Trials, and Studies

We are in discussions with a lot of groups to make sure that Stella is on the top of their lists if and when any trials and studies are available in relation to medicine and a cure. One of the areas we are looking into is Gene Therapy and the use of IPSCs. Currently we have her enrolled in a Baby Brain Imaging study at UCLA and a Cortical Visual Impairment (CVI) study at Children’s Hospital Los Angeles.

Keto

Stella continues to be on the intensive ketogenic diet and is tolerating more solid food which means she is requiring less formula. Our hope is to have her mostly on solids vs formula by the end of the year. Grandpa Joe’s cooking continues to help in these efforts and Grandma Nancy’s cleaning of the pots and pans post-cooking ensures that Stella constantly has the tools ready for the next batch of food! 

StellaStrong.com

It has come to our attention that the search for a cure needs to be handled as much like a business as possible in order to get the respect and attention from the rare disease community. The good news is that if our family knows anything, it’s how to organize and run a family business! As you know, we went LIVE with www.StellaStrong.com in April thanks to Aunt Sara’s incredible website creation skills and patience with me with all of the constant updates! Thanks to Uncle Sam for reaching out to his network and bringing the StellaStrong logo to life! We also went ahead and created @stellastrong.com email addresses (mine is CC’d here), so don’t be surprised if you see emails from that domain some day! And as social media is a necessary evil to most businesses these days, we went ahead and created accounts on Instagram and Facebook as well with usernames @TeamStellaStrong so come check us out!

Family

Grandma Jane and Papa Dick have officially packed their bags and are headed to their new home in LA this month! Stella can’t wait to make up for all of the lost time of not being able to see them this past year because of COVID!

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The more time that goes by, the harder it is becoming for me to find the right way of thanking you all for all of your continued generosity, love and support to our entire family. “Thank you” just doesn’t seem like enough and doesn’t hold even close to enough emotion I have for all of you, but I also don’t know any other words to convey thanks. Just know that we are totally overwhelmed and thankful for everything that each and every one of you continue to do for our family and for our little girl. Thank you for being the Team Stella Strong that will help us put all of the energy possible to get us the win of finding a cure in time for Stella to realize it! We really don’t know what we would do without you.

Staying “Stella Strong”,
Jessica, Greg, and Stella