Home Sweet Home

On Friday, January 8th, we arrived home after 5 months in Italy. While we were essentially quarantining most of that time due to the pandemic in various stages and out of safety for the girls, each day was non-stop and it went by in a blur. As a client and friend of mine, Chris Rose, told me about being a work-from-home parent, “the days are long but the weeks are short.” 5 months seemed like an eternity at the beginning and now seems so minor.

Once we hit the halfway mark, I was actually dreading coming home. And I think I was the only one to feel that way. I felt like coming home meant while Keira would be saved it would be time to face Olivia’s very limited future and the decline to get there. Granted, this would happen no matter where we were in the world but, to me, our time in Italy felt like we were in a bubble, away from reality. And coming home meant popping that bubble.

The week before our flight my stomach was in knots. But I knew it would be good for every one of us to be home. Livvy was actually clearly excited, which can be a rare occurence. While she can’t talk to us she still understands everything so we told her we would be going home the following day and that she got a new big girl bed in her room. Her eyes lit up, she got a big smile and gave her little laugh. That night, she couldn’t even get to sleep like normal because she was so excited. And on the plane rides home she didn’t sleep a wink; eyes wide open and ready to be back.

Now, having been home a few days and readjusting after jet lag, I am beyond glad we are here. Eva has her room and her “poochie poos” (our dogs, Watson and Sherlock), Livvy has her new bed and her normal surroundings with better temperatures to be outside (she loves being outdoors), and Keira has her actual home, her own room and so many toys to re-explore since she may not remember much after spending half of her life in Italy.

What an unreal journey to say the least. But we are beyond grateful for this entire opportunity and the many people who have touched our lives to make it possible. We will definitely be leaving behind a piece of our hearts in Milan but are looking forward to figuring out whatever our new “normal” may be here at home.

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!

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.