I’m not sad. I’m angry with Rett Syndrome. We are in a very strange and confusing place as parents – not just parents of a beautiful child with special needs; not just parents of a brave girl with Rett Syndrome; but parents of a little girl who struggles through more than any little girl should have to.
Rett Syndrome has clearly progressed for Magnolia. The battle has been nonstop and the stakes seem to keep getting higher. When I look at other families with individuals with Rett Syndrome, I wonder if their lives are the same. Are the stakes getting higher for them or has Rett Syndrome plateaued? It’s hard to know looking at social media. It seems to be individuals with Rett are either in the hospital and very sick or seemingly fine living their daily lives. I know we mostly post our adventures and positive moments. Right now, we squeeze in those moments between all of the other chaos that is happening with her.
For us, we seem to be in a strange place. Magnolia isn’t in the hospital, but life for her isn’t fine. She has been having a plethora of GI issues, her caloric intake is minimal and she most likely is getting a feeding tube in her belly (called a G tube). On top of it all, her seizures that went away for a couple of months are back. She is dealing with it all. She has been more emotional, frustrated and angry throughout a lot of the day; and it’s completely warranted. Life for her right now isn’t great. For the last month, on a weekly basis, we have had to evaluate whether or not we should take her into the Emergency Room. We have had multiple conversations on what her threshold is. We have talked to all of her doctors to figure out what the criteria is for each issue that is happening. Because they are all big issues. Seizures, how many until ER? Or how many days can she go without eating? What if she is still having a couple of Pediasures each day? How long without drinking anything? What if she is just screaming in pain? So many conversations for so many issues. It may seem like a no brainer to take her into the hospital should any of these issues arise in your typical child. But this is a daily occurrence. It hasn’treally felt like an emergency. So we make doctor’s appointments, suffer through the weeks leading up to those appointments. We live in the unknown until we see a doctor, and even then its a guessing game with the doctor of what to do.
I’m angry that we spend our lives maintaining and managing her care and pain because life is that difficult for her. I’m angry that I have a bag packed with clothes and supplies for her and I, just in case. I’m angry that I haven’t been able to look into camps for her because everyday has been difficult. I’m angry that with every hill we climb, there’s another hill on the other side. It’s not fair for her. At some point, there has to be a break for her. OK. I’m a little bit sad about it too.
Trying to live our best lives in the hardest of moments.
If we get to sleep, I usually wake up positive. This has been a big shift for me over the past five years. I didn’t use to wake up positive. Honestly, I was living in a fog. The fog of grief. Now most days I wouldn’t say there is grief, just a wave of sadness, and also not everyday. Most days, I’m fine. All things considered, I think that’s pretty good. I didn’t think I’d get to this place.
The reality is, emotionally we live moment to moment. When the good outweighs the bad, we’ve had a great day. It’s when the bad moments start to outweigh the good ones, that’s when we start to wave the white flag.
I’ve been thinking about this a lot. I am tired of the tease of calm waters. The past couple of years have no doubt been hard. Waves of symptoms affecting Magnolia. If it’s not seizures, it’s breathing issues, or GI issues, or balance issues, or unexplained pain, or her body weakening and tightening, her hands have mostly stopped functioning with constant wringing, the list goes on. Rett is relentless, but then we get moments and we breathe lighter. A little bit of weight lifts off our shoulders. Then those moments turn to weeks. We are in awe, we enjoy the reprieve, we hope it stays. We celebrate medicines working. We adventure. Then it stops. We watch daily as symptoms slowly return. The waves start crashing bigger again.
I try not to compare Magnolia to others afflicted with Rett Syndrome. Sometimes its curiosity, sometimes its jealousy, sometimes it’s survival. What is that mom doing that I’m not? I’ll reach out for advice. Usually when I reach out, I find out, they are drowning too or they are in their own dingy rowing like crazy trying to stay ahead of the next crashing wave. I’ve realized, every family is in their own small boat, making sure they are wearing life jackets, because the waves of Rett are relentless. Nobody has found land, not yet anyway. Until we find land, we will keep trying to live our lives as best as we can in our dinghies. #dinghylife #rettlife
We are so excited about it. Rett Syndrome is starting to get the awareness that it deserves. This campaign has been a long time coming and is the result of four Rett families putting in their blood, sweat and tears to make it happen. Mostly tears. I am so thankful for Stephanie Bohn, Matt Baker, Nanea Miyata and AJ for making this happen.
The News We’ve Been Waiting for: “Gene Therapy Program for Rett Syndrome will be advanced by biotech company.” Last week RSRT sent out an email announcing they will be going to a Gene therapy trial for Rett. Reading those words took my breath away. I froze for a moment. My hands were shaking. Since Maggie was diagnosed, I had hoped I would read those words one day.
Rett Syndrome will be going to gene therapy trials. Its not if, its when. That is huge. As always, thank you for being our support. We are not there yet, and we will need more help. But we will get there, with a little bit of pixie dust.
Monica at RSRT wrote a blog, that is honest, hopeful and informative. She discusses what a gene therapy trial would possibly mean for us. Read that blog here…
There is so much hope. Take the time to read the initial press release here. It is worth it.
Pixie dust goes here
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.
I’ve blogged about Maggie being sick. A lot. It’s the worst. Having a sick kid is always hard, but having a sick kid who can’t tell you what’s bothering them and can’t control their body to blow their nose, spit out mucus, keep from rubbing pink eyed eyes, or do any of the things that you and I take for granted when we’re sick – it’s terrible. It’s exhausting and draining and unfortunately our reality.
Maggie has been sick on and off since January. It started as allergy driven pink eye, then became conjunctivitis, then after two visits to the doctor where “there’s nothing we can do, it’s viral, she’ll get better soon”, the doctor gave us antibiotics and after about two weeks of bracing her arms so she couldn’t touch her eyes, washing her hands constantly and heavy doses of antibiotics she eventually got better. For a week. I get furious at doctors in these situations. Their job, to me, has always been to heal, but for pediatrics, it seems, their job is more, to make sure it’s not life threatening. Both valuable jobs, but I’d prefer the former.
Then she picked up a virus – that started as a cough, turned into a cold, developed into a bronchial infection, ultimately caused her hyperventilation I wrote about here , then she went to the doctor where “there’s nothing we can do, it’s viral, she’ll get better soon”, and this time the doctor was right and eventually she got better. For two weeks.
Then she picked up another one. This one, so far, has been the grossest of all. It started as a cough, moved into a cold, turned into vomiting mucus, then mucus started coming out of her eyes. What is that? Why is that a thing that happens to people? Though this is the first time she’s actually stayed in bed while she’s sick. It’s typical behavior, so that’s good, but it also gives us an indication of how ill she really is. I don’t sleep much when she’s sick since I’m sleeping in her room to make sure she’s ok and during this particular illness, instead of getting up at 6, she’s been sleeping until 8, 9 even 11. So the sleep is good for her and me, but I can’t get an actual good night’s sleep when I’m getting kicked in the face all night, so sleeping longer just means I’m getting kicked more and that makes me cranky and angry. Not to mention the added stress of not getting our new infant sick. So Jenny is a single parent to a newborn, while I single parent Maggie. We switch off, but not without a lot of hand washing and clothes changes, so the baby doesn’t get sick.
Other than the 3 weeks she’s been healthy this year her appetite has been next to nothing, she’s lost a few pounds and she’s actually gone down a size in pull-ups. When feeding tubes and malnutrition start to creep into the conversations about what we’re going to do to get her healthy and keep her healthy, it starts to feel a little overwhelming. But then she’ll get better, eat like a horse for a week put some weight back on and hopefully not get sick again for awhile. Her balance gets thrown off too when she’s ill and she can barely hold herself up. Is that weakness or does congestion just screw with her equilibrium that much? Hard to know, but when she is better, much of her balance returns and after a few weeks we forget how scary that was. But this round of illnesses, has been a little overwhelming for us. She has been constantly hyperventilating, has not been able to eat, so dropping weight, then also losing her balance, and there are days she doesn’t want to walk without assistance. Needless to say, we have had to discuss medical equipment, hospitals, and any treatment that may help her, if there even is one. Again, exhausting.
During these illnesses she can’t go to therapies or school. She’s unwilling and unable to be successful at any of it and whether she’s contagious or not, it’s a risk not worth taking for her therapists or teachers, understandably. So we have to find other things to do. There’s only so many times she can watch Frozen. OK – fine, there are only so many times I can watch Frozen. So one day, I took her to the park instead. There, in spite of her feeling less than 100%, she still found a way to amaze me. She still played and ran and giggled. She fought through it and exhibits far more grace when she’s this sick than I do when she’s sick.
It’s a testament to her strength that regardless of how she’s feeling she can handle it with grace. It’s a reminder to me of how I should be behaving. But every now and then I’m gonna be mad for her. Even if she isn’t.
Guest blog – submitted by my brother Steve Tesler with help from Maggie’s cousins, Leo and Zeke Tesler. So grateful to have a village of people who go the extra mile.
Every December for the past couple of years, my kids break out their piggy banks and apportion a certain percentage of their accumulated allowance to charity. Their charity of choice has been the Rett Foundation as the cause is near and dear to their heart.
This year, they wanted to do more for their cousin, Maggie! We brainstormed ideas for raising more money which included bake sales, walk a thons, and the like. We settled on a great idea!
One of Zeke’s friend’s mom owns The GaGa Center in NYC. We decided to invite all of their friends and classmates to an evening of fun where we could all be GaGa for a Cure!
The kids wrote up a little essay and we put it on a flyer which they handed out to their friends and classmates with an invitation to join in the fun and with an appeal to donate to our cause:
Will you be too?
Hi!! I have a five year old cousin named Maggie (that’s her on the top right). Maggie is an awesome cousin. Sadly, she was born with RETT syndrome. RETT syndrome is a unique developmental disorder that is first recognized in infancy and seen almost always in girls. Maggie is unable to talk because of RETT syndrome. Instead, she has to communicate through a computer program. Maggie also doesn’t have full control of her movements, so she also has to wear weights on her arms to help control her body.
Recently, our family went on a vacation on a Disney Cruise, which would be like paradise for most five year olds. Sadly, the noise was too much for her sensitive ears, and she wasn’t able to fully enjoy the vacation. But, she is still my animated, energetic, full of life cousin. And that is why I want to fight to find a cure to RETT syndrome. Will you help?
There is no cure for Rett yet, but we are throwing a fundraiser to help us raise money to find one.
Please, donate and help us find a cure today!
Will you be too?
I have a cousin named Magnolia(Maggie for short). She’s the one on the top right. She has a sickness called Rett Syndrome. Rett is a sickness that can effect girls that are 18 months old, like it did to Maggie. She was walking and starting to talk, when she suddenly forgot everything!
A little while ago, we(my family)went on a Disney Cruise. I remember seeing her use her talker(a computer program that lets everyone know what she’s thinking)and wishing I could talk to her for real. A special moment I spent with her was when we were sitting on a couch and just bouncing around. It was special because it felt like I was communicating with her!
There is no cure for Rett yet, but we are throwing a fundraiser to help us raise money to find one.
Please, donate and help us find a cure today!
On Friday, February 26, 2016, we had almost 50 kids converge on The GaGa Center. While the kids played, we streamed a series of videos of Maggie on the big screen TV’s. The kids had a blast and even a number of the parents got into the pit to play!
Thanks to the thoughtfulness of my kids and the generosity of their friends and classmates, we were able to raise about $3,000…at the FIRST annual GaGa for a Cure event.
Here’s to many more guys. Thanks again,
AJ, Jenny, Maggie and Grayden
When Maggie was first diagnosed with Rett, AJ and I were adamant that we would only donate money to find a treatment or cure for Rett. Then we found out there were clinical trials that had started but were having a hard time getting applicants to commit to the trials. Why would this be? We couldn’t fathom it.
Maggie was 3 years old at the time and we knew we would do anything to get her a treatment. If there was a possible drug, nothing would stop us. Why were parents not jumping to get their girls into trials? We understand, of course, that trials aren’t treatments, but trials are the path to treatments. Without completed trials, treatments will never come.
Then we started doing the math. The cost of having a girl with Rett is significant. There are therapies, doctors appointments, specialists, adaptive gear, therapies, adaptive toys, and supplements to name a few extra costs. Most families’ budgets are strained trying to help their girls on a daily basis much less add the cost and expenses of traveling to a trial for days to weeks at a time, over and over again. Not to mention the days off of work. When we put this all together, we decided we wanted to help. This is the exact reason why Colleen English and her family started the Rettland Foundation – to help families get to the trials. If families need help getting to trials, and we can help, we wanted to. So we’ve donated a fund of $3500 for her organization in the hopes that people would match our fund and expedite this process.
A treatment or cure can’t get here unless trials happen, trials can’t happen if families can’t get to a trial, and families can’t get to trials when participating is as expensive as it is.
Will you consider a donation to rettland.org in order to help get us closer to the cure?
Thank you for following along.
Therapies, therapies, therapies….
13.1 Miles. I have never aspired to be a runner. Two years ago, I downloaded the couch to 5K app on my phone. I thought, well it’d be nice if I could run a 5K, that’s 3.1 miles. Who knew that two years later, I’d be running my 3rd half marathon, 13.1 miles. It’s not easy, but it is worth it. I kept telling myself, during my training. This is the last one, and possibly it is. I just don’t know. I think I’m more interested in running a 10K, I can run that easily, and not kill myself during training. There is just something about those 8, 9, 10 mile training runs, that beat my body down. It took me longer than usual to recover, and my right knee was really hurting. If you saw me, there were times I was icing my knee while driving, icing my knee at a movie or our comedy show, and icing my knee most evenings while drinking wine and watching The Walking Dead. But, that being said, I finished this half marathon and thought I could do that again.
There really is an exhilaration that comes from running and completing a tough run. For me, it is very emotional. I cry while running during training and during the race. There are times, my body feels heavy, aches or is exhausted but what really keeps me going is thinking of Maggie. I can’t tell you how many times, I would want to stop running before I should, but I would say out loud while running “Keep running, don’t stop, Maggie doesn’t get to quit.” I’m sure anybody that I pass thinks I’m crazy but it really helps me focus. Because Maggie doesn’t get to quit Rett, we don’t get to stop fighting for her, its not okay to cruise to the end. We have to finish strong.
This race was extremely special for me. This was my second time running the Disney Avengers half marathon for Girl Power 2 cure. The second time running with my niece Kaylen and the first time with my brother in law Sean, by the way…he jammed my finger playing tetherball on the playground when I was in 3rd and he was in 5th grade, so he owes me a half marathon or two.
We were Team Magnolia. It is amazing having my family run with me. I was feeling down about raising money for this race, because our friends and family have been donating to various events this past year and I felt like it was too much for me to ask them again. Then Sean emailed his friends and they started donating. We raised almost $8K and I can’t thank Sean, Kaylen and all your friends enough.
Running the race, was such a great experience. I wasn’t in a lot of pain, I kept the same pace throughout the race and I had a good time doing it. I ran the first 7 miles or so with Kristin Hileman who works with Girl Power 2 Cure.
I hadn’t really hung out with her, so this was like having brunch with a friend, but we’re running and eating weird race gels and beans. I enjoyed our time together. Its hard to explain how easy it is to hang out with other Rett parents that I barely know. But I do feel a strong bond with other Rett parents – that unspoken connection that just says ” I know what you’re going through”. We are all dealing with this horrible disease, fighting for a cure and trying to have a life along the way. It’s just nice.
I really am happy that I ran the half marathon. I’m so proud of Sean and Kaylen for doing it with me. But honestly, I’m in awe of my niece Kaylen and the amazing woman she is turning into. When Sean and I really couldn’t put into words how we were feeling after the race, Kaylen does it eloquently. Maggie has a great role model in her cousin. Of course, Maggie is a great role model for everyone, how not to give up and finish strong.
Also, thanks to my mom and AJ for making us our #magnoliashope superhero capes. Team Magnolia really is awesome.
Rett is a progressive disorder – it will get worse and worse until there is a cure. In other words, we are never out of the woods. Every girl’s Rett syndrome is different. These were Maggie’s Rett symptoms last year.
Maggie has lost her speech.
Maggie’s arms & hands have Parkinson’s like tremors.
Maggie hasn’t lost all hand function, but she has lost enough.
Maggie’s right hand constantly wrings so she wears a glove to protect herself.
Maggie’s left arm constantly hits her face, so we brace it to protect her.
Maggie has had a few Rett Episodes, which are similar to seizures but not seizures.
Maggie has GI issues.
Maggie’s body temperature has a hard time regulating.
Prone to respiratory infections.
Visual sensory processing disorder
Sensory processing disorder, proprioceptive and vestibular.
Maggie has Global apraxia, which is difficulty with motor planning. Motor planning incorporates every motor skill. Walking, climbing, eating, playing,etc.
Maggie can still walk, run, jump, follow directions, smile, laugh, play, swim, climb and eat by mouth.
Everyday she works hard to keep the skills she hasn’t lost and to regain those that she has.
And Maggie is considered mild for Rett
This past year, Rett did progress. Maggie lost more hand function, we are a moment away from full loss of function. Maggie now drools more often and has tongue thrusting. She now has more anxiety. She has breathing problems, holding her breath for short periods of time and hyperventilating with regularity. Maggie has also had several seizures, right now they correlate to when she is sick. Her right arm is also very stiff – which may be the beginnings of dystonia…tbd
This is Maggie’s Rett and what she deals with everyday. These are other symptoms typical of Rett that Maggie does not yet have. But as it progresses, we may have to deal with them as well.
Scoliosis, fragile bones
Impaired Cardiac problems, potentially causing sudden death
Difficulty walking, leading to wheelchair
From the moment we get up to the moment she falls asleep, we help her fight for her skills. Maggie is a fighter! Rett keeps knocking her down, but she gets back up. This is why we fight for her. For a cure.