coronavirus

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.

Livvy’s 1st Treatment in Amsterdam

After our two-week quarantine, Livvy was finally able to restart the treatments for her clinical trial. Because there is not a site available for this study in Italy, it requires weekly trips to Amsterdam.

I needed to stay in Italy with Keira for her doctor’s visits, so Dave and my Mom took Livvy for her first treatment.

She did wonderful on the flight, had a great first day and took an immediate liking to the doctors there! They even made a welcome sign for her. 😊❤

Because the universe has a funny way of working, Dave soon found out the hotel’s guest services representative graduated from NAU in Flagstaff, AZ and was actually from the same town Dave was born in (Fullerton, California)! It’s truly a small world we live in!

Livvy happened to be wearing her Beatles “All You Need is Love” shirt that day (she loves all Beatles music) and the staff member informed them that this hotel is actually where John Lennon and Yoko Ono spent their honeymoon. He arranged a private tour for them that evening (and I am so bummed I couldn’t have been there for this)! See below for pictures:

The following day was her treatment. We were nervous since it’s a new place for her but they let Dave hold her instead of laying on the hospital bed and she did really well!

In a few hours they will be en route back to Milan and will all have to take COVID tests in the morning to ensure Keira’s (and everyone’s) safety before she is admitted to the hospital on Friday.

Dave did note that because the COVID-19 levels are so low in Amsterdam that the schools have all reopened and masks are not required. 😳 Amazing to hear of that kind of progress when things are still so scary in other parts of the world.

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.