Every year that passes is a reminder of how far we’ve come and how far we are yet to go. The one thing that 2018 was about for us was focusing on living instead of hoping. We are still optimistic about what these treatments are going to do and how transformative they will be for Maggie, but, if 2016 and 2017 were 100% about Maggie’s health, 2018 was about her life.
We made a pact to ourselves that we wouldn’t let Rett define her anymore. That it was a part of her life, but not her whole life. That while she could still do things, we would still do things. And, if she never loses her zeal for accomplishing new things, then worst case scenario is we’ve provided her a full childhood, complete with incredible memories.
So, even though I had to travel more for work this year, even though we knew each journey would be hard, each activity more complicated, and that no adventure was 100% until we had actually made it to the destination, we were determined to try.
The first part of the year was especially trying as we juggled seizure meds in hopes of regulating her system. She had been on Keppra and then Topamax and none of it seemed to work. Worse, her mood was suffering, and her body seemed like it was struggling against the effects of the medications. Her breathing had become so debilitating that she could barely even sit upright at times. We spent more days in the hospital than we would have liked, but were lucky to not spend as many days there as others must. Maggie got a new GI doctor, a new dentist, a new orthopedist, and she got back to seeing her old physical therapist. Her back started to bend forward with her head getting more and more difficult to keep up, whether as a result of exhaustion or pain. But, 2018 also ended with a new medication, Acetazolamide, that dramatically improved her breathing, and a new neurologist who suggested we wean her off the other seizure medications to see if, maybe, they had become unnecessary. So, 2019 will start with Maggie off of seizure medication for the first time in 3 years and if all goes well, she won’t need them again.
2018 also brought new adventures like zip lining, mountain biking and kayaking. She biked (downhill) by herself, skateboarded by herself and enjoyed numerous trips to the beach on all three coasts. She got to see Taylor Swift in concert, had a soccer game where she scored 5 goals, mastered gymanstics, rode roller coasters at LegoLand, tried butter beer at Harry Potter World and rode a unicorn. She received a perfect attendance record and a top student award at her school.
I made less videos this year, and instead, Jenny and I chose to focus on making one big one. Hopefully, we will be able to show Magnolia’s Hope, the feature length documentary, to you soon. Jenny started a new job, helping raise awareness and family support for Girl Power 2 Cure as well as editing their quarterly magazine.
Jenny and I kept up with our fundraising, chairing the Rett Gala in Los Angeles and Austin, and helping Jenny’s sister and brother in law as they launch the First Rett Gala in San Antonio set for 2/16/19. Our families attended events in New York, LA and Texas. We reached our goal on our rettgive.org/magnoliashope page, raising over 50k. I played in a golf tournament for Rett Syndrome, we supported multiple events with auction items and have been increasingly amazed at the continued outpouring of support. At one of the events, a scientist from Avexis held up a vial, claiming that was the gene therapy that would transform our daughter’s prognosis, suggesting trials will begin early in 2019. We’ve made major strides, but we’re not quite there.
We ended the year in Aruba, Maggie overcoming incredible odds to make it to her happy place.
So we are full and grateful for all that we can do, happy to be able to fight for those who may not be able to. We are fortunate to have the incredible support of all of you and hope you’ll continue to be engaged in our story. We are optimistic that 2019 will bring continued successful scientific discoveries. We know it will bring more incredible adventures. We owe it to Maggie to make sure that all of this is true.
I haven’t sat down to write a blog about Maggie since December. That’s actually not right. I have sat down to write, but I didn’t know what to say. Jenny took up the reins and she kept you all updated on most everything that’s been going on. But I also wanted to put it in my words. I haven’t made a video in 5 months because Rett Syndrome is hard. Watching videos of Maggie struggling as I edit reminds me of how hard she struggles. But, I wanted to share this emotional roller coaster with you.
It’s been well documented (by us) how Maggie got sick last April. How she lost her balance. How her breathing got so bad that her lips would turn dark blue almost black. How she would shake and cry uncontrollably. We’ve talked ad nauseum about the doctors we’ve been to see, the ones with suggestions but no answers, or the ones with answers to questions we hadn’t asked. Rett Syndrome is no joke.
Imagine yourself in our shoes for a moment – watching your daughter struggle to breathe, struggle to stand, struggle in the severest ways possible – and doctors who offer absolutely no solutions. There’s no recommendations, there’s no medicine, there’s only, “sorry. This is just Rett Syndrome.” We’ve met new doctors, travelled to new specialists, engaged with new experts. “This is just Rett Syndrome,” is not how we were looking at it. This was something new and somebody was going to have an answer.
We’ve given Maggie CPR 3 times in the last year. Stories we may tell one day, but those days are too hard to relive for us right now. We’ve given her rescue medication for seizures twice. We’ve been entirely helpless. But Maggie has continued to fight. She had a different story she wanted to tell. So she went to her therapies. Though she couldn’t do nearly as much as she was able to a few months prior, she kept going. She kept trying. She persisted.
Three months ago we admitted her to the hospital to treat her seizures. It’s complicated to find the right medication, the right dosing. As of three weeks ago, it seems like we may have. Her seizures have calmed a lot. Instead of a few a day, she is down to 1 or 2 per week.
With all of the hard work and a medicine that seems to be working, Maggie’s started to smile again. We’ve started to see that joy. We’ve gone on adventures, nervous that she wouldn’t be able to enjoy them and I’m excited to share those stories with you over the coming weeks – especially because Maggie didn’t just enjoy them, she thrived.
She has worked hard enough that she is holding a cup for a few seconds at a time now. She is swinging and holding on. She is skipping and giggling.
And after a very hard year…so are we.
Everywhere I look, I see people saying 2016 was the worst year. I get it. There is no doubt 2016 was extremely difficult for us. You guys have watched Maggie push through so many obstacles that Rett has thrown at her. The past few years, we celebrated her accomplishments more than not.
Then 2016 happened. It was a very hard year for her, and you watched as she lost so many skills, walking, balance, hand function and breathing normally. She is still fighting to get those skills back. She is walking better, but needs more assistance than before. Her balance is getting better, but she falls more often, so needs more assistance. She lost all of her hand function except being able to grasp a fork momentarily with her left hand. Her breathing has its good days and bad. On a good day, she hyperventilates and breath holds fairly often. On a bad day, it’s nonstop and painful to watch and scary for her. She is mentally stronger than I could have ever imagined. This little girl will not give up without a fight, I’m talking hanging on to a cliff by a fingernail and pulling yourself up, kind of fight.
2016 wasn’t the worst year of our lives. So much greatness happened as well. Grayden came into our lives and we couldn’t have needed him more. Maggie loves her brother. Grayden loves his sister. We love them both. Our family is complete. This strong, funny and curious little boy will learn so much from his sister.
THAT’S NOT ALL…
The science for Rett Syndrome is moving fast. Maggie participated in a clinical trial this year for Trofenitide. It wasn’t easy but she showed us it was worth it. We had to drive to San Diego 3 hours away 8 times in 10 weeks, I think. I don’t remember anymore. We made each trip a family vacation and made the most of it. Maggie played on the beach, swam, hiked with family, and surfed. She really loved surfing. Grayden learned to roll over, sit up, and crawl at the same time.
THAT’S STILL NOT ALL…
Hello, Mark Zuckerberg! AJ’s and Maggie’s videos reached some pretty influential people this year. So Magnolia’s Hope really brought the awareness this year. Very excited about that. AJ works on fundraising year round for various events but his biggest event is the Reverse Rett LA Gala. He won’t stop until we raise enough money to cure Maggie and all of the other girl’s with Rett. I’m right behind him, actually next to him. We are Partners in Crime. I spoke at the event, thought I bombed, turns out everyone was crying.
We truly are thankful for everyone that follows our blog. Watches our videos. Shares our story. Donates money. From the bottom of our hearts thank you and please hang in there with us. We will cure Rett Syndrome, but we aren’t there yet. We look forward to sharing our story with you in 2017, and we are hoping for more highs than lows this year.
We always say Maggie is the reason we will win this fight. But truly it’s our Magnolia’s Hope village. Thanks for your support, tears and willingness to donate. Love to you all. (written by Jenny)
Happy New Year!
AJ, Jenny. Magnolia and Grayden
PS. You might see more blogs and videos from me this year. AJ’s work schedule just got busier.
We spent the last week in Texas with Maggie where she, once again, was showered with love and affection from her cousins and Texas family. Always nice to be in such a welcoming environment.
We were scheduled to be in Aruba for New Year’s, basking in the love and affection of perfect weather and beautiful beaches. But, Maggie got sick. She wan’t going to come anyways. She was supposed to stay with Grammy and Pops. But, it’s hard to leave her considering how difficult she is on a day to day basis when she’s feeling great, it’s even harder when she’s sick. It was compounded by what we believe was another seizure. Apparently they get triggered by sickness, if it was a seizure that we observed (I’m not a doctor). Whatever it was, wasn’t the sign of a healthy kid who would be able to adjust without her parents for a week.
As we were discussing whether or not we should still leave her and go on our little vacation, we both realized we forgot our passports. So, even if we wanted to go, we wouldn’t have been able to. At least we can chalk it up to being dumb instead of unlucky. We’ve chalked enough up to being unlucky in the recent months.
And it’s a good thing we didn’t go, because the night we were supposed to go, Maggie decided not to sleep. At all. She just wanted to play. I have read about that as a symptom of Rett – nighttime is party time for many of the girls – but it wasn’t something we had experienced. At least she was happy and giggling throughout the night. Though the next day she was a bit of a mess, understandably, as a result of the exhaustion and all. I hope it’s not a lasting thing, and is just an isolated incident as a result of her being sick, but who knows?
Aruba would have been nice. But, it will have to wait. Really, just being able to spend some time together was the primary goal. Unfortunately that will have to wait too.
As a result, I think that’s a new year’s resolution for both of us:
Be more present for each other. It’s hard, dealing with all of the other things we have to deal with on a day to day basis, but it’s important and we do our best.
My other new year’s resolution is – no surprise:
To Cure Rett.