Fear Not

Yesterday I wrote about a family that we met years ago who had two kids with MLD. One was a part of the trial, and the other, Omar, was too progressed for treatment. I shared that we are staying in their room where they used to stay, and how special their only son Omar was to me! Today when we were in the hospital, I brought up the family only to learn that he passed away from MLD not even a month ago. My heart was crushed for his mom, dad and three sisters. Suddenly as I looked at Eli and Ella, nothing else seemed to matter at that moment except the fact that they were here, alive and happy. Omar will be missed and I will never forget his smiling face, his laughter and the joy he brought to many.

The kids slept surprisingly well last night, and we actually made it to hospital on time today. 8:30 may not seem early, but trust me it is, especially when we walked there, and even had breakfast before we left.

We arrived to some wonderfully familiar faces and went into the waiting room where we met Dr. Biffi and her team more than ten years ago.

We started the day with an EKG for both, along with a blood draw.

From there, we went right into the motor skills evaluation, which they both did really well with, despite it being our first morning at the hospital.

We had a quick break, so we went to one of the familiar pizza places below the hospital. Some of our friends who have worked there for years were still there, and one of them, Carlo, came right up to us to say Ciao to the kids. It’s amazing how many people we have come to know over the years and we feel so grateful for those familiar faces.

Back for one more test after lunch, and it was a simple X-Ray of their hand to check their bone age. As simple as this was, it threw Ella into a bit of a panic and she was ready to go home. She was upset and crying as they shut the door, but the women were great and after talking for a minute she realized it’s not really the X-Ray, but everything else that was upsetting her. Thankfully after this, our day was complete and we were headed back home.

Time for gelato!!

We ate gelato, finished our walk home, and got ready for dinner. We are trying to see some old friends while we are here, so we headed to Hotel Rafael for dinner and got to see our friend Vicky as she works there. She was our waitress tonight, which gave us plenty of time to catch up! It is just beyond beautiful when I think of all the wonderful people that we have met, who have helped us in some way, shape, or form along this journey.

We had a delicious dinner, reminisced about the years and moments spent here, gave lots of hugs and walked back home, not before stopping at the beautiful fountain that is outside of the hospital for a quick pic! The perfect way to end a great first day for these heroes of ours!!

As hard as this trip can be, with so many emotions being dredged up, I can’t help to be reminded that this too shall pass.

Unfortunately, for those like Omar, that weren’t so blessed to get Gene therapy or another life prolonging treatment, MLD continues to rob them of everything that their parents hold close, until their body can’t fight anymore. So, tonight I choose to go to bed thankful for the laughter at dinner, the tik tok filters of Huts face that made Ella laugh till she cried, and the conversation happening in the other room between Eli and Hannah. This may be hard for us, but the alternative is much harder. I Never thought I would reach this level of acceptance all those years ago, but I am slowly getting there. Learning to love and accept not only the skin that I am in, but loving and accepting the body that Eli and Ella are in as well.

“ The luckiest of the unlucky”, I have said it for years, but on days like today, it hits home even harder and I thank God for being my anchor through it all.

~ by Rebecca on April 17, 2023.

Posted in Along the way, Diagnosed, Diagnosis, Life after diagnosis, living, Milan, the ride of my life
Tags: acceptance, changes, clinical trial, day by day, eli and ella, Eli and Ellas Prayer Warriors, Eliandellasprayerwarriors, Enjoythemoment, family, Fear, gene therapy, God, gratitude, hope, journey, joy, learning, life, Love, luckiest of the unlucky, memories, metachromatic leukodystrophy, Milan, miracles, MLD, never give up, rare disease, San Raffaele, sorrow, special needs, strength, warriors