Stella Update December 2023
Dear Team Stella,
No, you didn’t miss an update…you are correct that the last update we were able to put pen to paper on was June 2022, and we are deeply sorry about that. For what it’s worth, Grandpa Joe has been on us to get something out to everyone for a long time now; however when writing to a mass amount of people on such personal topics, it’s important to be in the right mindset with some sort of overall messaging—wouldn’t you agree? Well that finally happened and I didn’t want to let 2023 end without an update, so without further ado, let’s start updating you on all things Stella for the past year-an-a-half…
Let’s start with the biggest update of all—Stella became a BIG SISTER on May 31, 2023 to her wonderful little brother Clark Mandel Linderman. Clark was born a perfect 6 lbs 3.8 oz and 18.75 inches and so far perfectly OK in the genetic department. (We’ll cover more on this topic on another update) He takes after his sister as he has a smile that could launch 1,000 ships and has made our world full of so much happy! We guess you could say that between having a pregnancy filled with sickness the whole time immediately transitioning to learning the balance of our new life between a newborn and our Stella with all of her needs may be one reason for the delay in an update to you all—but you know what they say about excuses, right? So I’m not going to go there 😊 But everyone, say hi to Clark! 😊
Quick background to Stella’s voyage:
There are a few new followers added to this update distribution list, so I wanted to make sure to give a quick recap of the background to our voyage:
Who is Stella? Stella is a beautiful 4-year-old who is the first daughter of Jessica & Greg; first granddaughter of Joe & Nancy Mandelbaum and Dick & Jane Linderman; first niece of Sam & Kelsey Mandelbaum and Sara Linderman; first GREAT niece to Henry Mandelbaum; and first cousin on this side of the family to Milo!
Stella was born a perfectly happy and healthy baby with no pregnancy complications, and for the first 5 months of her life we were the happiest we have ever been as a new family. Stella had her first seizure on April 13, 2020 and on April 27th, 2020, we received the forever changing news of her CDKL5 Deficiency Disorder (CDD) diagnosis. CDKL5 is a rare genetic disease that causes both daily seizures as well as severe developmental impairments. There are currently no definitive drugs or treatments available to manage CDKL5 kids’ seizures to give any sort of break. There is such a wide range of development success rates that there is no way of knowing where Stella will land on the spectrum--meaning we don’t know if she will ever fully walk or talk. We continue to work tirelessly to get Stella all of the resources necessary to give her every chance to be the newest standard of what the best case can look like for this terrible condition.
So, what is new with Stella and our pursuit of a cure over the past year and a half? The answer is A LOT! So, sit down and pour that coffee or cocktail, because my wordiness has not improved at all!
Nonprofit Status APPROVED!
The majority of our energies and efforts these days revolve around Stella and getting her everything she needs for future independence and endless happiness. However, as we all know, the biggest tool that will help her achieve future independence and happiness is a cure to this terrible genetic disorder and a cure in time for her to realize all of its benefits.
For this reason, our family decided to form the Cure Rare Foundation, a nonprofit organization that will focus on fundraising efforts to provide additional financing to science, research, and implementation of findings in the gene therapy world. With all the rapid advances that the scientific community is currently undertaking in the genetic and gene therapy sphere, we are convinced that this is where the cure lies not just for CDKL5, but for most rare genetic diseases that haunt so many families.
We are currently finalizing our year-one business plan and branding, and we will send out a much more detailed announcement once all of that is complete.
In the meantime, we know that we missed our opportunity to be on your radar for 2023’s “Giving Tuesday” and year-end donations, but we ask that you please keep the Cure Rare Foundation in mind to add to your donation lists for next year. Currently a link is available on the StellaStrong.com website while we are building out the Cure Rare Foundation website.
I know it may seem a little confusing as to why we didn’t just name the nonprofit “Stella Strong”? Don’t worry, “Stella Strong” isn’t going anywhere and will remain the central location and idea for all things Stella where we will keep you updated on all of her “happenings”; Cure Rare Foundation is going to be where we focus on fundraising for the cure!
Stella’s Skillset Progress!
Since our last update, Stella’s hard work continues to pay off and she has learned all new skills! Some of the skills include:
Taking a LOT of independent steps!
Reaching for objects she’s interested in!
Picking up one of her meat nuggets from her tray, bringing it to her mouth, and successfully eating it!
Approximating the word “on” to turn the bathtub water on!
Standing up from a chair on her own—even if the chair is low to the ground!
And many many more!
It’s been a year and a half of so many happy tears of us being even more proud of our hard little worker than before! All of these successes are definitely due to Stella’s undeniable drive and determination, but we would be amiss to not give credit to all of her teachers, therapists, and BFF caregivers Crystal, Johanna, Lily, Paulina, and Taylor (in alphabetical order to be fair)! She is still the hardest little worker we know with one of the busiest schedules full of:
~ Physical Therapy
~ Occupational Therapy
~ Speech Therapy
~ Hippotherapy
~ Feeding Therapy
~ DMI
~ Music Therapy
~ Vision Therapy
~ Physical Therapy ~ Occupational Therapy ~ Speech Therapy ~ Hippotherapy ~ Feeding Therapy ~ DMI ~ Music Therapy ~ Vision Therapy
As with many families, the year has ended with a lot of sickness floating through our household, and Stella was sick with numerous things (colds, hand-foot-mouth, stomach bugs, more colds…) from September through December. The difference when Stella gets sick as opposed to other kids with less needs is that we can’t give Stella the same medicines or foods to make her feel better due to her strict Ketogenic diet she is on for her seizure control, which makes illnesses last longer and possibly get more severe. On top of that, Stella often experiences regressions in skills which scares the entire family on whether these skills will ever return. For example, prior to getting sick, Stella was really starting to move-and-groove taking independent steps all over the house and getting brave enough to explore new areas on her own. During these past sick months, it was as if she was too scared or forgotten how to walk on her own, and some of us started fearing whether this amazing skill was gone forever.
The great news is that Stella’s confidence in walking has returned and the past couple weeks we have seen her take more independent steps than ever before!
But why did I end this section talking about this? Just wanted to give everyone a little food for thought during this cold/flu season. It may not be a big deal for you to get a cold, but it’s a massive deal for some families. A cold to you might mean a hospital visit for another family, increased seizures when fevers are involved, or regressions that lead to loss of skills completely. So when possible, stay home to rest when you’re sick—it doesn’t just help you get better faster, but it can make all the difference in the world to families you will never know about 😊
Preschool!
Ladies and Gentlemen…we have a natural scholar on our hands who absolutely LOVES school!
Stella started preschool in February 2023 at Eagles Nest Preschool in El Segundo. This is a fully inclusive program where Stella is the only kiddo with special needs in the class and she has a dedicated aid with her the entire time.
There are very few words to truly describe the magic that the teachers and administrators created for Stella’s first day; all of the kids in her class were ready for her and soooooo welcoming, and now she has the most incredible group of girlfriends that we could have ever hoped for! It is so amazing for Stella to finally interact with kids her own age, and the impact that Stella is having on the rest of the kids in her class amplifies why inclusion matters; these kids are learning patience with Stella—learning “hand-over-hand” to help Stella with fine motor activities—and learning how to safely hold Stella’s hand to guide her and walk through the classroom and playground. As a family we always hoped Stella would be welcomed into this world and have genuine friends, and that is what this school has done for her. It warms our hearts so much when we drop her off at school with her so excited to leave our side for class and immediately hear, “IT’S STELLA!!!” with smiling faces running towards her.
Stella is also now receiving some of her therapies through the school where they are concentrating on Stella gaining specific skills to succeed in a school environment. She is receiving such services as: adaptive PE, occupational therapy, physical therapy, speech therapy, and vision therapy consultations—all on an individual level as well as in a group setting with other special needs kids from other classrooms. These additions to Team Stella have been significant to all of the progress she’s made this year and we don’t know what we would do without them!
Eye Gaze Device!
One major triumph that Stella’s speech therapist and entire Team Stella at preschool has done is procured an “Eye Gaze Device” for Stella to use to learn how to communicate! Eye-gaze technology is a ground-breaking system that allows preschoolers all the way to adults to communicate with purely the micro movements of their eyes while looking at a tablet that will speak for them! Stella has been practicing these skills with all of her speech therapists since the beginning of the year, however thanks to the school district, we now have a device more readily available for Stella to practice these skills more often! THANK YOU TO EVERYONE WHO MADE THIS HAPPEN! You have opened doors for Stella that we have only dreamed of. Now it’s time to get to work and learn it!
Therapist Appreciation!
We try to make it very obvious about our gratitude for all of Team Stella’s therapists and caregivers in all of the time and energy they give to our little girl to help her live her best life. Stella doesn’t always make it easy on them, and we are grateful for them not giving up on her regardless of if a session is full of smiles…or tantrum screams. This past Valentine’s Day we showed our gratitude to one of Stella’s clinics, NAPA Center, by catering the therapists and employees with the In-N-Out truck to show our love and appreciation!
Fundraising Efforts
Due to the timing of Stella’s little brother’s arrival, Stella’s amazing Uncle Sam took the reins and led this year’s fundraising efforts by throwing the Second Annual Stella Strong Workout Challenge Fundraiser! Sam collaborated with one of the South Bay’s most popular gyms, Gate14, a workout challenge that encouraged participants to work as hard as Stella has to work every day, which then concluded at one of Southern California’s most notable breweries, Culture Brew Co. The day comprised of lots of sweat, fashionable t-shirts, an incredible raffle, delicious beer, and lots of smiles. Sam’s above-and-beyond efforts raised over $20,000 for the Cure Rare Foundation and got us excited for all of the fundraising opportunities 2024 will have to offer.
Care & Cure
We are lucky enough to have one of the top Neurologists and Epileptologists in Los Angeles as Stella’s main doctor, who happens to also lead the CDKL5 Center of Excellence here in L.A. Dr. Rajsekar R. Rajaraman (aka Dr. Raj) just happened to be the neurologist on call the day of Stella’s 1st seizure and has been by our side during this unforeseen life ever since and we don’t know what we would do without him.
Dr. Raj was honored at this year’s Care & Cure Institute Gala, an affiliate of the Epilepsy Foundation, and he asked that Stella’s story help him describe all that he does for the epilepsy community. The Care & Cure Institute improves the lives of children living with epilepsy by financing the medical training of pediatric epileptologists, for the purpose of mitigating and eliminating the catastrophic effects of epilepsy. Since 2006, they have partnered with many of the major medical centers in the Greater Los Angeles area, raising funds for the medical training of 45 Care & Cure fellows. The amazing thing is that over the past 3.5 years, Stella has had the opportunity to be a patient to many of these fellows for various reason and we owe so much to their expertise to the Care & Cure Institute!
We would do anything for Dr.Raj as he has done so much for us! Please reply here or message Jessica (Stella’s mom) directly if you would like the YouTube link to the video honoring Dr. Raj at the Gala; since it contains brief clips of Stella’s seizures, we would rather not just share the link here as some people on this distribution list may not want to see those. It is an amazing short 8-minute video honoring Dr. Raj and highlighting Stella’s story, however to be honest, this video needed to be at least an hour to do the justice that Dr. Raj deserves for all that he does for families like ours.
Thank you again, Dr. Raj!
Stella’s Getting a Tricycle!
If you look at photos and videos of Stella and think, “gosh she’s tall”…you’re right! Stella has always fallen around the 97th percentile in height and is currently over 3.5’ tall! Because of this we are starting to have issues finding strollers that fit her and need to start looking for alternative means of transportation. So for her birthday we found an incredible organization, SoCal Trykers, that helps get funding to build tricycles for special needs people, and thanks to some of your very generous contributions we were able to get her fitted on her birthday for her very own Tricycle for us to push her around in! Everything “special needs” takes longer to arrive than preferred and we are hoping to get her tryke by March! Stay tuned for some fun photos!
Conclusion
These are obviously just some of the highlights of the year and a half, but there is so much more to report and comment on regarding our Stella voyage. Our 2024 goal is to send more regular updates so that the updates also decrease in length 😊
It took me a long time to figure out how to write this update. Every time I tried to put pen to paper I just didn’t even know where to begin. And then I recently started watching the original Mary Poppins with Stella, and I then knew exactly what my overall message needed to be…
Confession—when I was a little girl, I watched Mary Poppins over, and over, and over again. I made my parents and family watch it so much that they still don’t let me live it down to this day. Well Stella LOVES music which is why I turned it on for her, and it turns out she loves it too! (Not as much as The Sound of Music or Encanto—but it’s still in her repertoire) It’s always funny how watching movies of your childhood as an adult can take on such different meanings. And I’m pretty sure that the messaging of Mary Poppins must have been permanently engrained in my head as a kid without me even realizing it. For instance: “loving to laugh”…the importance of family…using your imagination to step outside (or inside) of the box…and heck, there’s even fighting for equal rights in the mix! And I’ll be honest that a day doesn’t go by that I don’t wish I could just snap my fingers and the house straighten itself up! If you haven’t watched the movie in a while I strongly recommend busting out the popcorn to sit down and enjoy.
But since starting to watch it again with Stella recently, the biggest message that I have taken from the movie, even as a little girl, was this:
“In every job that must be done
There is an element of fun
You find the fun and snap!
The job’s a game
And every task you undertake
Becomes a piece of cake...”
Stella’s CDKL5 diagnosis comes with so many complications, expenses, hurdles, appeals, and an endless to-do list in order to get her the resources she needs to help her (and by the transitive property, us) live her best life. We are constantly told that “we don’t know how we do it all.” But the answer is always pretty simple—she’s worth it! And now after rewatching the movie over and over and over again I realize that our whole family and Team Stella have just been tackling her diagnosis with a “spoon full of sugar” without realizing it.
Thank you all again for all of the love and support you have given to our entire family. Thank you for being our village and team to help us give Stella the life filled with happiness that she deserves. This is still just the beginning of our Stella voyage and thank you for being along for the ride with us. Cheers to a 2024 with more positive news to report than not, and we will be sure to do a better job with our updates.
Wishing everyone a happy and healthy new year!
Love,
Jess, Greg, Stella AND NOW, Clark!
