On March 10, 2023, my husband Pasquale (then 44) got diagnosed with amyotrophic lateral sclerosis (ALS). Never could we ever have expected his lingering back ache and fatigue to result in such a diagnosis. After all, he was a full-time car mechanic and it was tire change season so these symptoms were frequently felt by him and his work colleagues.
We have two children, Lorenzo (now 13) and Aprilia (now 10). Needless to say, receiving this diagnosis shook us and frightened us to the core. We were in complete disbelief of what was happening to our family. After all, how does a man in great physical condition with impressive cycling and hockey performance and who takes pride in his good health end up with a progressive degeneration of nerve cells affecting nerves and muscles? Nobody in his family ever suffered of anything similar. Like my kids would say, "It's so random".
As brave and strong he may be, it's sad to say but this disease is a scary mysterious beast that literally hunts you down ... at least that's how I perceive it.
The good, the bad and the ugly
I briefly mentioned the bad and the ugly part of ALS, but surprisingly enough, lots of good and even amazing things have happened to Pasquale and our family since his diagnosis.
For starters, our family has been able to cope with the physical and emotional toll ALS has on Pasquale thanks to the help and support of our loved ones. Family and friends have been awesome with us and have shown their generosity in different ways.
Also, we got blessed with falling in the best hands possible. Dr. Angela Genge accepted to follow Pasquale soon after he got his ALS diagnosis in March. Dr. Genge and her team of gold have been beyond great with us. We cannot thank them enough for the excellent care and kindness on top of being so knowledgeable about ALS.
Finally, one summer day, Aprilia and her very close friend Siena who is also one of our neighbors came to see me asking for permission to organize a lemonade stand.
They had previously gotten the okay of Carla, Siena's mom. I'll be honest, my first impression of the idea of setting up a lemonade stand wasn't looking great until I heard them say that they had the intention of donating all the money to a hospital. That's when I knew I couldn't and wouldn't say no to them.
Lemonade for ALS research
The idea of raising donations for The Neuro where her dad is followed, gave Aprilia an immense boost of motivation and determination to work hard with Siena in making this lemonade stand a success. She was ready to put in hours of her time to do something that can somehow help her dad gain hope.
In just a few days, Carla and I helped our girls get organized for what became an event. The word started spreading faster than we prepared for. Our family stepped in to help cause on July 23rd, the lemonade orders came in faster than we were anticipating. I had to send out my family to the grocery store a few times to be able to keep producing our delicious lemonade. Aprilia and Siena worked at their full capacity and kept their big smiles and motivation throughout the event never complaining once! My son Lorenzo helped with the set up and the lemonade production. Siena's little sister Alessia (5) was running left and right to help out in so many ways. My family and my in-laws helped immensely. So many familiar and less familiar faces surrounded us. Even a group of motorbike friends showed up to donate and did a cool motorcycle parade.
Donations were dropped in faster than the lemonade poured out! All these folks came to support us in raising money for The Neuro towards ALS Research. We have the pleasure to announce that thanks to the initiative, determination and hard work of these two young girls we were able to raise $8,600 to help Dr. Genge find a cure for ALS.
We will soon be organizing other fundraising events.
Now that is amazing!
