One Year Later
Dear Family and Friends (aka, Team Stella):
We hope that everyone is well and that the light of the end of this COVID tunnel is shining bright for everyone to help life get back to a new normal soon.
Today marks the one year anniversary of Stella’s first seizure and the beginning of what is now our family’s new normal. We thought it was a good time to check-in and give a quick recap of the last year and where we are today. But let’s be honest, I have never been a woman of few words, so by “quick” I mean you should probably pour yourself a drink before you start reading :)
As most of you are aware, 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. CDD is a rare genetic disease that causes both epileptic activity (aka seizures) as well as severe development impairment. There are currently only 200-300 known cases in the world. There are currently no definitive drugs or treatments available to manage her seizures to give her a 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 walk or talk. We have been working tirelessly to get Stella all of the resources necessary to line her up for future independence and happiness--all during a global pandemic nonetheless.
I’ve been trying to think of the best way to sum up the past year, and two things come to mind that are closely related:
The first thing that comes to mind is one of my favorite songs from my favorite Broadway musical, Rent, called Seasons of Love. For those of you not familiar with the lyrics of that song, I included hyperlinks to both the vocal and written versions in this paragraph (it’s a great song, so enjoy!). It’s the beginning of the song that I’m relating to the most: 525,600 minutes, 525,000 moments so dear. 525,600 minutes - how do you measure, measure a year? ...
The second thing that comes to mind is “Counting”
It feels as though all we have been doing for the last 525,600 minutes is counting. And it occurred to me that describing all of the things that Greg and I have had to count the past year was a good way to organize this update. So here we go! We have been:
Counting for the Neurology Team: How many seizures did Stella have today/this week? How long did the seizures last? How long has it been between seizures? We were fortunate that the Neurologist on call the day that Stella had her first seizure was somehow coincidentally the same doctor who started and leads the CDKL5 Center of Excellence here in Los Angeles at UCLA Mattel ensuring that Stella has been receiving the best care for her condition from the beginning.
Counting for the Ketogenic Diet Team: How many grams of fats/protein/carbs are in each meal? How many ounces of liquid does she drink every day? How many ketones is she creating? The ketogenic diet is a special high-fat, low-carbohydrate diet that helps to control seizures in some people with epilepsy where seizures don’t respond to medicine--like CDKL5. It is prescribed by a physician and carefully monitored by a dietitian. It is a very sensitive diet where everything needs to be measured to the 10th of a gram. When Stella first went on the keto diet, she responded incredibly and got a 36-day seizure free period! Unfortunately this “honeymoon period” ended and we are working tirelessly to get her another break soon. There is so much to the diet, that we have also been working with a keto consultant to hold our hands a little more to make sure that we are doing everything right for our Stella. IMPORTANT HIGHLIGHT: Stella is truly one of the luckiest girls in the world with the best personal chef this world has to offer--Grandpa/Chef Joe has taken it upon himself to make her every meal for his Stella. Joe food preps on a weekly basis to make sure she gets the best and freshest meals around and in return, she has become a BIG foodie who gobbles them all up! Stella’s hits tend to be steak and Brussel sprouts, lamb and eggplant, salmon with dill, chia pudding, and copious amounts of butter in line with keto diet.
Counting for the Gastrointestinal Team: How many times did Stella poop today? Yes, believe it or not, this matters A LOT! The Keto Diet and seizures in general come with their major potential impacts on the GI system, so we have to keep a close eye on things in this department.
Counting for the Sleep Team: How many hours did Stella sleep in the last 24 hour period? Sleep issues are one of the possible elements of CDD that we are trying to combat from the beginning for Stella. It also doesn’t help that Stella’s seizures revolve around her sleep cycles which then disturb her sleep significantly. Again, counting our blessing, the first night nurse we used with Stella specialized in sleep training and provided Stella with some INCREDIBLE sleep habits since the beginning of her diagnosis. We also recently started being monitored by UCLA’s Pediatric Sleep team to combat sleep issues further.
Counting for her various Therapy Teams: How many seconds can she hold a certain position? How many sounds can she make? Early intervention therapy has consumed our days in order to aid and progress Stella’s development as much as possible. Her weeks consist of: Feeding Therapy, Physical Therapy, Occupational Therapy, Speech Therapy, Feldenkrais Therapy, and Early Start Education Therapy. She averages two-45 minute therapy sessions each weekday which means that she truly works for the weekends just like the rest of us!
Counting for Child Care: How many people do we need for daytime help? How many people do we need for night time help? COVID created so many issues, but one of the biggest issues it created for us was the help with Stella that we so very much needed and couldn’t get. Given the fact that we were constantly in-and-out of Dr’s offices, hospitals, and therapies put us at pretty large risk of exposure to the virus that we didn’t want to expose our family to. So we needed and found some of the most amazing people to help us. Thank you so much Maria and Madison who help us during the days, and to Susan, Uloma, and Johanna who help watch her at night. You all are truly our angels and have helped us through this learning process of a year.
Counting for Research and General Health: How many organizations are out there focusing on research and a cure for CDKL5? How many medicines does she have to take and when and how much of each? What are her blood test results and how do they compare to last time? How many hospital stays have we survived? How many EEGs have been recorded? How many doctors visits/zoom calls have been needed?
Counting for $$$: I’m not going to go into the various questions here. Instead I want to say how thankful and grateful for the much needed assistance we have received. First, second, third, fourth, and all the way until 100th probably, we want to thank both of our parents. We really don’t know where we would be without all of the financial assistance we have received so far from Joe/Nancy and Richard/Jane. No words are enough to thank them, but we are going to keep trying! We are also navigating through all of the social service resources that Calfironia has to offer children with conditions like Stella’s and have been so lucky for the social workers we have been assigned to help us in such organizations like the Regional Center, Partners in Care, and Chai Lifeline. We also can’t thank Jessica/Karen/Liza enough for having the foresight of the financial burden Stella’s diagnosis would create for us and insisting we let them set up a GoFundMe mid last year to help us start out on this new journey. There are still very few words to thank you all who contributed to that too. The kindness and generosity you all showed towards us and our little girl is overwhelming and so appreciated, and we just want to take a second to thank you all again here.
And don’t worry, there are several spreadsheets we created to keep track of all of the above and more to share with her incredible doctors, therapists, and researchers who make up such an important part of Team Stella.
So yes, I have to say that we literally spent the last year counting each and every one its 525,600 minutes for Stella. 2020 was obviously a rough year for the Linderbaum Family (Linderbaum = Linderman + Mandelbaum for those who don’t remember). On top of Stella’s diagnosis, plus COVID keeping all of the much needed hugs away, we were also dealing with an uncertain economy creating the stress of Greg potentially losing his just-acquired job at United Airlines.
The good news is that 2021 is looking brighter: all of the immediate family is vaccinated, allowing Joe/Nancy/Sara/Sam/Kelsey to have more Stella time; more of our extended family and friends are also vaccinated creating more opportunities for hugs in the near future; Dick/Jane’s house in Redondo Beach is nearly ready for them to move in to this summer and we can’t wait for all of the Papa/Grandma time about to be had; Sara is all transplanted into LA life from San Francisco and here helping make sure that Greg and I stay well fed, as well as learning the Stella routine and helping us with a detailed market analysis of the various organizations out there working on CDKL5 Disorder research and cures (all while going back to med school!!); Sam continues to make us all proud with his pursuit to be a firefighter, and he & Kelsey ring their much anticipated wedding bells at the end of this year and gosh are we looking forward to all of the happy that will be had!
Most importantly Stella continues to make tremendous progress. We have seen her seizure activity reduce to roughly once per day, she is in the beginning stages of crawling it looks (fingers crossed!), and she is quite the foody. It makes me so sad to think of how many people on this email list who are SO important to us who have still never met Stella because of the awful pandemic and I hope that we can right that wrong soon! So I am including a very amateur video montage of her progress below from the past year from most of her therapists which also includes videos from our most recent intensive therapy session for you to see how Strong Stella truly is!
While Greg and I were immersed these past 525,600 minutes in the everyday “micro-tasks” of taking care of Stella such as her therapies, medicines, doctors, seizure control, social services, etc, the rest of the team has taken it upon themselves this past year to take the more “macro” approach to Stella’s diagnosis. Joe has worked tirelessly to make sure that the entire CDKL5 research community knows about Stella and has taken the time to introduce himself to all of the organizations to find out who is doing what and how we can help advance a cure more quickly. Currently we are very sold and set on gene therapy being our answer for Stella and are learning as much as possible about that world. Nancy has been busy reading on the intricacies of the brain and how certain therapeutic activities can help Stella with her development as well as possible seizure control exercises. Dick and Jane stay in communication with their network of doctors to help us stay informed and make all of the very difficult medical concepts we are being introduced to more manageable to understand. Sam and Sara have taken over the CDKL5 social media world to learn about what has worked and not worked for other CDKL5 families, as well as alternative therapies and tools to try out, and have made sure that everyone in the various support groups know about our Stella. Because of this group of people, Stella is as ahead of the game as she can be at this time, and we are ever so grateful of all of the time and energy everyone continues to give her.
We recently learned that June is considered “CDKL5 Awareness Month” where many families all over the world arrange fundraisers to aid research for a cure and relief for our kids. Kelsey, Sara, Sam, and Joe are leading the charge this year of partnering with a couple pre-existing fundraisers we were introduced to over the last month and setting up “Team Stella Strong” for these events to be able to donate through. But stay tuned, because we plan to spend this next year building a big fundraising event of our own for June 2022 to help advance the awareness and support needed to get to a cure faster...Linderbaum style! In the meantime we are participating in the following two CDKL5 fundraisers:
The Million Dollar Bike Ride--a fundraising event organized by the University of Penn Medicine Orphan Disease Center, to advance research for CDKL5 and other rare diseases. University of Penn will match up to $30,000 raised for a specific rare disease, so we are first concentrating on this fundraiser to try and get as close to that amount as possible to maximize the dollars for CDKL5 research. To support Team Stella Strong, go to: http://givingpages.upenn.edu/stellastrong
Move CDKL5 Forward -- this fundraiser is organized by the International Foundation for CDKL5 Research (IFCR) and is a month long fundraising event to support one of the leading organizations solely focused on finding a cure for CDKL5 Disorder. To support Team Stella Strong, go to: https://www.justgiving.com/fundraising/stellastrong
You have all already given so much that please don’t worry if you cannot contribute financially--anything you can do to spread the word to your networks in order to raise awareness and stressing the importance of finding a cure for genetic diseases like CDKL5 is more appreciated than you will ever know!
We are also creating a “StellaStrong.com” website to make a centralized location for Stella updates, CDKL5 links, donation information, and more. The website will be live by the anniversary of her CDKL5 diagnosis, April 27, so feel free to check it out then! Thank you SO much Sara for being our in-house web designer and taking the time to build such an incredible website so quickly! And thank you SO much Kelsey for spearheading the coordination between the two CDKL5 fundraising events we are supporting. And thank you Joe for leading the charge for it all!
So I’m sure by this point you have all poured yourself several drinks thanks to the length of this email, and I am very impressed on anyone who actually made it this far. You have all just been so generous to my family over this past year, that I wanted to take the time to give you the best Stella update I could.
So I wanted to end this novel of an update by answering the initial question posed: 525,600 minutes - how do you measure, measure a year?
Measure in Love.
Thank you all again for all of the love and support you have given to our entire family. Thank you for being our village to help us give Stella the life filled with happiness that she deserves. This is just the beginning of our Stella voyage and thank you for being along for the ride with us. We hope that these next 525,600 minutes bring more positive updates than not, and we will make sure to keep in touch no matter what this year brings.
Love,
Jess, Greg, and Stella