Traveling with Special Needs

We’ve all heard the stories of parents traveling with children on airplanes and the issues that can arise while doing so. The crying, the yelling, the bathroom breaks, the snacks, the kicking of chairs, you name it.

I would take all of that any day over what we have had to deal with when flying with Livvy each week.

It’s not just her special needs but also the COVID rules which can cause issues with the airline.

Because she is 2 years old, she is required to have her own seat. However, she cannot support her upper body so we have to hold her upright in that seat (which she doesn’t like). So, instead, we hold her on our laps during take off, in-flight and landing. Some airlines are understanding but others not so much.

Also because of her age, she is required to wear a mask on some flights. This she not only doesn’t like but also can’t understand. So we usually let her eat/drink on the plane to avoid this issue.

Another problem is that while she is 2 years old and 3 feet tall, she cannot use the bathroom like a normal child her age. She can’t walk and has to wear diapers. We have actually been told by a flight attendant to take her to the airplane’s baby changing table in the lavatory (which she does not at all fit on). So we have to lay her down on the seat between us and speed-change her diaper.

Traveling with her (or taking care of her in general) also requires two adults. One that can carry her on/off the plane and another to carry our back packs, and open/close the stroller.

It’s not an easy trip. Especially if she is screaming in pain or crying out of frustration.

I have my elevator statement to flight attendants down to a science due to the amount of times they have chastised us for her in-flight care, or needs.

“She has a terminal illness that affects her brain and she can no longer talk, walk or support her upper body.”

I genuinely feel for every parent of a special needs child that has to fly with them and explain over and over again the issues they/we face. It sucks having to repeat that out loud so many times in front of your child who can still hear and understand most of what you are saying.

The travel agency who books our weekly flights for her clinical trial does notify the airline of our situation but we still have issues.

And to top it off, seeing all the children her age walking, talking and running around the airport is like a punch to the gut. That should be her.

Utah Bound

During the last part of our stay in Milan, we found out that the Utah site of Livvy’s clinical trial may be opening soon. Thankfully, it was in time for our return to the States and this week we made our first of many weekly trips to Salt Lake City, Utah for her infusion.

The team was very nice and understanding and the treatment went really well (no tears from Livvy!).

But one of the best parts was the travel was much easier on her (and the rest of the family). At one point during our weekly trips from Italy to Amsterdam Eva said to me “I don’t want you to go! It doesn’t feel like home when you, Dad and Livvy are away.” 😥

Because it is such a short flight (1 hour) from Phoenix we are working on making it a day trip in future weeks so that we have minimal time away from Eva and Keira. And both the PHX and SLC airports are much closer than they were in Milan so the drive time is even quicker (another plus for Livvy who does not like being in her carseat).

While the clinical trial is not a cure for MLD and is only meant to help stall the progression of the disease, we are very hopeful and grateful for the extra time it is allowing us to have with our Livvy.

Snuggles with Livvy as she naps before her treatment.

One Last Hospital Stay for 2020

Just so we could really round out 2020, Olivia and I are currently going on our 2nd night in the hospital at San Raffaele.

The other day around 2am she started to get a fever and it kept coming back. The following morning (yesterday, the 29th) it was accompanied by some strange eye movements. So after a call to the pediatrician on call in we went.

While awaiting a urine sample (because we suspected it to be a UTI), they took a blood test which confirmed her CRPs were up significantly (a c-reactive protein test measures the level of c-reactive protein (CRP) in your blood. It’s sent into your bloodstream in response to inflammation).

We were then admitted and taken to get her an EEG because of her eye movements that morning (she kept blinking and looking around and it was as if she had trouble keeping her eyes open). Keira had an EEG before as part of her gene therapy treatment so I was prepared – they put a little cap over your head with nodes in it that have gel, and the wires are connected to the machine they use. Results, thankfully, came back normal. Her eye movements were determined to be due to her very high fever (nearly 105) and we were instructed to call immediately and video it if it happens again.

Since then, Olivia has been on antibiotics via IV to take care of the infection and Ibuprofen/Tylenol to handle the fever.

Today, they also did an ultrasound of her kidneys to make sure everything was functioning properly.

After more antibiotics today and a blood test tomorrow we will hopefully be discharged so we can ring in 2021 with the rest of the family and not here at the hospital.

What a year it has been! Never a dull moment. Full of surprises. But also full of hope.

Here’s to a much better year in 2021! 🎆

Stuck in an Elevator

I cannot make this stuff up. Yesterday, I got stuck in our apartment elevator with Eva and Olivia. 😳

We were headed out to meet Eva’s friend Chiara when right around the 1st floor (we live on the 6th) the elevator made a big th-thunk noise as it shook and came to a stop. None of the elevator buttons would work. We were stuck.

And all I could do was laugh. 🤷‍♀️😆 What are the chances?? Apparently 1 in 100,000. So of course because we don’t have enough rare experiences in our life it was time for a new one.

With Dave out on a trip to the store my first call was to my Mom, who was still at the apartment with my Dad and Keira. She heard the “th-thunk” and the first thing she said was “Tell me you’re not stuck in the elevator.” After confirming we were indeed stuck in the elevator and asking her to call someone, my Dad flew down the stairs, made sure we were ok and got the front desk concierge. And Dave arrived from the store.

Meanwhile, I tried speaking via google translate to the Italian man that answered the elevator alarm call. I wasn’t sure if he understood me or not but he hung up.

Only a few minutes later Eva said she was bored. 😆 I was just thankful we made her use the restroom before we left and that Livvy wasn’t going to need meds anytime soon. In case we were stuck for a while we also had water with us and a few candy snacks we brought along for her and her friend.

Livvy didn’t understand what was going on so she was fine until she got tired of sitting in her stroller. So Eva and I started singing songs, like Itsy Bitsy Spider and Little Green Frog, to keep her smiling.

After some complaints from Eva, we heard a noise and saw light shine through a crack in the door. Someone was here to free us from the elevator!

After a few minutes they opened the door. We were indeed between floors. Because the opening on the bottom was bigger than the opening on the top we were going to have to get out that way.

I had told Eva she would get out first but she said “No! Livvy needs to go first because she is special and we need to take care of her.” 🥰 I reassured her they were both special and equally as important but because she was closest to the door it was ok for her to get out first.

At dinner last night Eva said “When will we get stuck in an elevator again? That was fun!” 😆🤦‍♀️

Yet again, another unexpected event happening in our lives. It doesn’t even surprise me at this point. Just another day of rolling with the punches with a smile on our faces!

Seeing the Girls Together

It didn’t hit me until I saw it in front of me. All three of our girls sitting next to each other at the table (and Livvy doing so semi-independently). This was something I never knew I would get a chance to see. And it was amazing!

I never thought I would see this day because I never thought of Livvy being able to sit independently without one of us helping.

While her weekly treatments in Amsterdam may be helping her stabilize somewhat her disease is still progressing and she is still losing abilities. She can’t sit in a chair on her own because she can’t hold herself up. She can’t sit in her stroller to eat because she can’t bend her body at a 90-degree angle to sit in it comfortably. So every day, every meal, one of us has to hold her and feed her while we eat as well (or we take shifts eating).

But now that she has her customized stroller/chair (a Zippie Kids Xpress from Sunrise Medical), she is learning to get used to that and it has been a game changer for all of us.

To see the girls together and to know that there will be many more days of them having this time together (where Livvy can feel like a big girl sitting on her own), is priceless.

I was so in awe during the moment that I took only one picture. 😍🤦‍♀️❤

Day 32 in Isolation

Dave has officially settled in at the hospital and Keira is as happy as can be! She hasn’t needed a transfusion (for hemoglobin or platelets) in five days, which is amazing, and she is well on her way to a quick recovery – albeit with 50% less hair. We are so relieved she is doing well and back to eating and drinking on her own. Her weight has also stayed steady, at around 10.6 kg, this whole time, which was something I was concerned about when we started this process.

Today, the doctors said if her neutrophils rise as they should she may even get to come home next week! Yay!

Meanwhile, on the home front, we have had a busy few days with Eva and Livvy and I have loved it!

We ate lunch outside at one of our favorite restaurants, made origami hearts and Halloween decorations with Eva, played dress up with Livvy, went for a walk to see all the fall leaves and horses that live next door, completed a puzzle with Eva, walked down the street to wave at Dad and Keira in the hospital room, played at the playground, and danced in the rain!

The Box & Livvy’s Future

This afternoon, without notice, two nurses came in and said we had to move rooms…right now. 😳 “Is this normal procedure?” I asked the nurse who was already in our room at the time. She informed me that we were apparently in an adult room and because a baby room became available we can move there.

Now let me back up for a second. When we first heard of gene therapy here in Italy in June we heard tales from other families of the isolation rooms being called “the box” due to their tiny size and the fact that you are stuck there for 40-60 days. So, of course, I was pleasantly surprised when we arrived to our isolation room on September 26th to find a quite spacious room with two large windows and distant views of the Alps. I wasn’t sure what all the previous fuss was about.

Until today…

Once I walked into the new room I knew it immediately. It was THE BOX. It is half the size of our old room, has a smaller bathroom and there is only one window with views of a hospital building roof and apartments across the street. Ugh…

It also has an adult size mattress (in length) in the crib so the electronic bed has to push the mattress vertically at one end. The mattress is also a little thicker than the baby mattress we had in our original room (which we were told we could not get back because it had to return to the pediatric ward), which means Keira (who is now standing up constantly) is a little higher in the crib and there is no way I’m stepping away from her while she is standing in it. After asking a resident about switching the mattress I was then told these are the mattresses they use even for babies. Hm.

So after a disappointing move, we ate dinner via video chat with Dave, the girls and my Mom and Dad, then had a call with the Arizona Early Intervention Program back home regarding Olivia.

What we thought was a regular check up meeting was apparently a meeting about transitioning her out of the program at age 3 (next summer) and moving on to preschool. 😳 Uhh what?

They jumped right into what preschool looks like for special needs children in our school district…4 days a week for 2-3 hours each day whether it be PT or OT needs and having socialization with other children. And possibly being strapped into a school bus in a wheelchair for transport there. No. No. And no were my first thoughts. I immediately started sobbing, sitting in the box, holding Keira, with my microphone on mute.

I wondered if they fully grasped what shape she is in and at what stage of this disease. Olivia can’t walk, she can’t talk, and she is often in pain and is very particular about who holds her. She currently doesnt even have a chair or other place she can sit by herself because she can’t support her own body (we are in the process of getting one customized for her). So, exactly, how could she go to school? Would she even let a stranger try to comfort her? Would this teacher even know how to calm her down when she is in extreme pain? And being around other children is in and of itself a problem. Coronavirus aside, any cold or illness she could get can progress her disease overnight. It could hospitalize her and put her in far worse shape than she is already in. And shipping her off on a bus, helpless and alone? No way. Just imagining all of that was too much.

It was not a call we were at all prepared for nor thoughts we were prepared to face. While we still have time to decide what life will look like for Livvy once we are back home, it is daunting, scary, sad and overwhelming to think about her future and it being cut so short by this terrible disease.

While we pray for a miracle, we hold on to hope that the treatments from her clinical trial begin to make at least some difference. Because MLD can progress so quickly we truly have to take things day by day. And while her future may not include traditional schooling, we know it will always include as much joy and love as we can possibly give her.

Ready for a Rebirthday

Yesterday it hit me. The enormity of what Keira is about to go through tomorrow. And how it wouldn’t have been possible without Livvy going through this first. She truly is the hero of Keira’s story. If only hers could have a different ending…we can only hope.

I usually power through each day, not focusing on the surgeries or the tests or the bloodwork and the medicines but the end result; Keira one day running, talking, going to school, being sassy to her parents, having pool parties in the summer and stealing her sister’s clothes. It is always eye on the prize.

However, I am usually too busy in the moment to really think about it. But last night it snuck up on me.

Keira is one of only 31 children in the world to receive this treatment. The process by which they make this happen is incredible. The fact that it’s even possible, and that it really works? Even more so.

While there are no guarantees, we have SO much hope based on everything we have seen.

At first I thought calling her gene therapy day her “rebirthday” was a little silly but it’s just accurate. Friday, October 2, 2020 will be the start of her new life. The life she should have had originally. The life that will promise all the things we normally take for granted every second of every day. The life she will live for not only herself but for Livvy as well.

I’ve said it many times before but every day of our lives since hearing Livvy’s diagnosis initially has been unreal (and it got even more unreal from that point forward) but this day may take the cake. I guess we’ll make it a “rebirthday” cake. 😊❤🎂

Keira done with chemo and still happy as a clam! 😁

A Little Bit About Livvy

Here we sit in Iowa City for our last weekly trip before heading to Italy. We have been coming here each week since the beginning of June as part of a clinical trial for our middle daughter Olivia (Livvy).

It is currently the only treatment option available in the world for symptomatic MLD children and requires weekly injections for two years. While it is not a cure, the weekly infusions offer the chance to stall the disease.

Results generally aren’t expected for 3-4 months (we are in week 9) but other parents enrolled in the study are seeing positive changes in their children, and some aren’t seeing a progression of the disease at all. We are remaining so hopeful.

Unfortunately Livvy has regressed quite quickly since getting sick in January (we didn’t get her diagnosis until the end of March) and we later found out that if MLD children get even a cold it can progress the disease rapidly. Now, as I’m sure you can imagine, living in a world of Coronavirus and having to take her on a plane weekly to get treatment is very much a double-edged sword. But the benefits outweigh the risk and we are extremely careful when we travel with her.

With our move to Italy imminent for Keira’s gene therapy treatment, we also had to think about what that meant for Olivia. Thankfully, the clinical trial has European sites. Unfortunately, there is not one in Italy. But a short plane ride away to Amsterdam is where we will get to take her (after we quarantine for 2 weeks) to ensure she continues receiving this treatment that will hopefully allow us more time to make more precious memories with her.

We are beyond grateful to have my parents coming along with us to Italy so that they can help us get Livvy’s treatments, and take care of our oldest daughter Eva, while Dave and/or I may be in the hospital with Keira for her treatment. It’s a juggling act to say the least.

We never truly knew the meaning of “it takes a village” until we had a child with special needs. From family, friends and our MLD groups to doctors, physical therapists and counselors. We are SO thankful for our village. ❤🙏

Our beautiful little Livvy! ❤

Perspective Amidst the Pandemic: Our Story

It is July 6th, 2020 and my entire family is fighting like mad to save the life of our 5 month old baby girl, Keira. Who, unlike her sister Olivia (age 2), has a chance to receive a treatment that could potentially give her a normal life and beat the life-wrenching disease known as Metachromatic Leukodystrophy (MLD).

It was on March 30, 2020 when we first heard those two fateful words, Metachromatic Leukodystrophy. Stay at home orders were in full effect as the Coronavirus pandemic spread across the globe, and we had spent the last month fighting for doctors appointments to figure out why our middle daughter Olivia had begun to have trouble walking, was tilting her head and why the irises of her eye would vibrate involuntarily.

We managed to get a second opinion that day with Dr. Vinodh Narayanan to get to the bottom of Olivia’s diagnosis. The first neurologist we saw said there was nothing wrong with her and to come back in a year. Had we waited, she may have lost her abilities to walk and talk much sooner than expected. 

Due to COVID-19 restrictions only one parent could go with Olivia to see Dr. Narayanan so my husband Dave attended in person and I attended via video conference. After a thorough examination and reviewing her MRI, Dr. Narayanan knew MLD was the likely cause of her symptoms thus far.

The words MLD did not register in my mind – it had to be a mistake…my heart felt like someone took a crystal vase and smashed it on the floor with all their might. Our biggest nightmare as parents had come true, a fatal disease with no cure.

How could this be possible when we did genetic testing before having children that showed MLD as being negative for both of us? Our world was shattered and our hearts were broken. Life is precious and, like every parent, we wanted to give the world to our children. Unfortunately, we won’t be able to do that for Olivia.

We soon learned that genetic testing does not truly cover everything. The test came back as negative for both of us because they only test for the 5 most common gene mutations that cause MLD. The ones Dave and I have are more rare. The chances we would have a child with MLD? One in a million.

This news quickly turned the Coronavirus into an afterthought. 

Just when we thought it could not get any worse, the genetic test results for our other two daughters came back. We were in Iowa at the time for Olivia’s weekly treatments for a clinical trial that will hopefully help stall the progression of her disease (she has already she has lost the ability to walk on her own, lacks pronunciation, lost the majority of her vocabulary and is in some form of pain on a daily basis) when Dr. Narayanan informed me on the phone that while Eva, our oldest daughter who is 5 years old, was a carrier of one of the gene mutations and would live a normal life, the news was not so good for Keira. Our dear 5 month old baby girl had the same two gene mutations as Olivia and would also suffer from this horrible disease.

My legs and arms began to shake and my heart raced. Tears began to form down our faces. If the chances of having one child with MLD is one in a million what are the chances of having two?

We immediately reached out to our network of support and found that there was a silver lining to the dark clouds overhead. Because Keira is pre-symptomatic she is eligible for a cutting edge gene therapy treatment only available in Milan, Italy. She would be one of only 30 children in the world to receive this treatment. While it is not a cure, it could give her a chance at a normal life.

To get her this treatment we needed to act fast. The amazing team at CureMLD.com connected us with the team of doctors in Italy to share information on what this would entail.

Not only would it require us to move to Italy for 5 months while Keira completes the treatment, but we would also have to transfer Olivia’s clinical trial treatments to a European site. And the cost to us, for treatment, lodging and travel? Hundreds of thousands of dollars.

My sister-in-law immediately set up a GoFundMe account and our entire family rallied around us to share our story with the community. While I’m not one to normally share sad news, or ask for help, we needed to do everything we could to save Keira’s life from this terrible disease. And we only have a few weeks to raise enough money to do so.

I’ve always worked hard for everything I’ve accomplished in life and do so every day on behalf of my clients. In 2013 I started my own public relations agency and it is my job to share my clients’ stories with the world. Now, I somehow had to do that for myself amidst this very real nightmare. Thankfully, the PR community in Phoenix is a very close group and my industry colleagues immediately began to help get the word out about what we were going through.

I try to count my blessings, amidst my daily tears. Time is precious, now more than ever, and I savor each moment with our girls. Because of COVID-19 we are all home. And unlike many others I see complaining about being quarantined, this has provided precious time for our family to be together at home every day while Olivia’s symptoms rapidly progressed. At minimum we have 2-4 years left with her.

I am etching these moments into my mind. I want them to live on forever…us laughing in the pool, having pretend tea parties and watching movies with our girls are priceless for every one of us. To see them each smiling and laughing is our key to happiness amidst the very real tragedy we face on a daily basis. 

The gene therapy treatment Keira is eligible for is not yet considered a cure – it has only been around for a decade – but it is at least a chance at a normal life. A chance to run, jump and one day go to school with her friends. Things Olivia will never get to do. These thoughts – this hope – are what keep us going and keep the love alive as we navigate the new world amidst Coronavirus.