Remember “ Baby Eliana”? (for LTC)

 THE MIRACLES KEEP COMING  (For LTC)

Sweet Chanale — a year ago, in the Succos 2019 edition of Mishpacha, we featured the story of Baby Eliana, who was born with a neurodegenerative disease called Spinal Muscular Atrophy (SMA). In May 2019, the FDA approved a revolutionary gene therapy, Zolgensma, as a potential cure for children with SMA up until age two. Eliana was diagnosed in June 2019, just a few weeks short of her second birthday. By that point, her crawling had become painfully slow and sluggish, she’d lost the ability to roll, and her overall motor functioning was weakening. She was headed toward a life of total dependence. Zolgensma seemed her only hope — but the cost was staggering, and the timeframe heart-stoppingly narrow.

After failing to secure funding from their insurance company, the race was on for Ariel and Shani Cohen to raise $2.2 million, the cost of the drug, with just six days to go until she turned two. In an unprecedented display of unity and caring, the Jewish world mobilized like never before, and the entire sum was raised in just three days. The day before her second birthday, Eliana — whose name had since been changed to Chana — received the life-giving treatment.

How did she fare since then? One year later, we checked in with the Cohens for an update — and received a recap on a year of prayers, progress, tears, and stubborn hope for their miracle child.

Motzaei Shabbos, July 20, 2019

Yesterday morning, Chana received the gene-therapy treatment that can potentially give her a normal life. I should be thrilled. But to be brutally honest, instead of floating through a cloud of euphoria, I’m slogging through a fog of overwhelm.

Zolgensma has the potential to cause liver failure, so Chana needs her blood drawn daily to monitor her liver-enzyme levels. Having been a human pincushion this past year, she’s developed a visceral fear of needles, and she resists them as if she’s fighting for her life. After an eternity of coaxing, cajoling, and bribing, the nurse managed to draw her blood, and minutes later Chana fell asleep, utterly depleted. We were at the door, thankful to finally be on our way, when we heard the nurse say, “Mr. and Mrs. Cohen, I’m really sorry, but we need one more vial.” Chana went even crazier the second time around. As I fell into bed at 3:00 a.m., all I could think of was how much strength we’ll need to traverse the exhausting road ahead of us.

 

Sunday, July 28, 2019

It was just a typical morning as Chana played on her stomach with her toys, when suddenly… there she goes! Barely breathing, I watched as she slowly rolled onto her back, and then onto her stomach again. For a second I thought I dreamed it. “Chana, can you do it to the other side?” I prodded gently, afraid to break the momentum. 

And miraculously, she did. I immediately texted our neurologist and asked if the treatment could be working this quickly, with results in just over a week.

We are inching forward in the dark — the doctors themselves have no idea what to expect. Most babies who’ve gotten the treatment did so at younger ages, before they’ve regressed much. Chana is one of the oldest children to have gotten the treatment, so she’s suffered a fair amount of regression, and whether that can be undone is the million-dollar question. Even if the drug just prevents her from regressing further, the doctors will consider it a huge success.

The doctor answered my text with a “G-d bless.” This, from a man who just a few months ago scoffed at any reference we’d make to G-d. He’s seen the miracles that brought Chana and Zolgensma together, and is now a different version of himself. His simple but hopeful text drove home that he knows no more than I do about where this is all headed

Tuesday, August 27, 2019

We’ve been working on having Chana bear weight on her legs for over a year, yet have gotten nowhere. Today, exactly five weeks and four days post-Zolgensma, Chana grabbed onto a rail and slowly pulled herself upright onto straight legs. For the first time, I feel in my bones that something is really, truly cooking.

Maybe this would launch another mother into a state of blessed ecstasy, but I tend to react with logic over emotion, and with each step forward, logic reminds me of just how much further Chana has to go. Who’d have imagined that long-awaited progress would leave distress in its wake?

Maybe if I had a normal life on the side — of coming and going, of schoolwork and shopping and errands and socializing — her progress would indeed leave me on a high. But Chana and I are frozen, together, in time and space. She’s been in quarantine for over two months — the steroids she takes to maintain her liver-enzyme levels can cause immunocompromise so she can’t be exposed to germs — and I’m with her all day, every day. “I want to go to shul,” has become a constant refrain; she misses playing with the other kids there. And sometimes she even begs to go to her therapy clinic, craving any stimulation at all.

To make matters worse, the steroids have turned my gentle lamb into a moody, violent little creature. And the Zolgensma has killed her appetite, making each meal a battleground. New toys and prizes are no match for the monotony that’s making both of us crazy. I’m coming to realize that the only way to get through this is to focus exclusively on today; thoughts of next year or even tomorrow can throw me into a spin.

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Monday, September 16, 2019

Today Chana took her very first steps! In physical therapy, sidestepping, leaning on some buckets. Good enough for me! Just two months ago the sum total of her mobility was a sluggish schlep/crawl that was growing ever slower. Even for big-picture-minded, unemotional me, today was huge.

Forward to recent date.

Tuesday, August 4, 2020

Chana literally hasn’t gone anywhere since the coronavirus lockdown in March, because she’s particularly vulnerable. It’s true that we’re accustomed to spending a lot of time together indoors, but the total lockdown has been extra challenging. This morning I decided: That’s it, we’re off to the beach.

I quickly realized that something so routine for most people is just not so realistic for us. There I was, schlepping the wheelchair in one arm, Chana in the other, slowly dragging her across the heavy sand. Finally, we made it to the edge of the water and I put Chana down in the sand, utterly spent.

As I sat and watched Chana play while massaging the muscle I just pulled, I was engulfed in crashing waves of self-pity. This is impossible, I kept thinking. Add going to the beach to the long list of things I can’t do. Everything is so easy for everyone else, but so hard for me.

What was the view of us from Above, I wondered, as we made our way back to the car. We must have resembled a slow-moving caravan traversing the desert sand. No one I knew had to be locked inside with a child who struggled to walk, whose future mobility was still a question mark, who couldn’t even take a simple trip to the beach without a wheelchair impossible to push through the sand.

Then we reached the parking lot and I stopped short. Heading toward us was a man pushing his daughter in a wheelchair.

I spoke to the man a while, and he shared his tips for making outings more manageable. But way more important than those practical bits of information was the realization that I’m really not alone in my struggle — there are people who really understand, and Hashem is right beside me always.

Which is really the point of our journey, I believe. The fact that a one-hour IV infusion can take a child facing a life of severe paralysis and remake her into a child with the potential for a life of independence is an awe-inspiring miracle for which we are boundlessly grateful. But the subtle way we touch others and are touched by others each day — the connections forged person-to-person and person-to-G-d — is no less miraculous.

And so I say thank you, Hashem, for my precious Chanale, who brings me infinitely closer to You than I ever thought possible.

From Mishpacha Magazine at https://mishpacha.com/the-miracles-keep-coming/