March 19th, 2017

(Disclaimer- I am not an objective observer here.  I am an emotionally invested uncle with no medical background whatsoever, so take this update for what it’s worth.)


Roughly 6 weeks away from the 2 year marker of when Ilana first got sick, we now have a pretty good idea of the illness’s long term effects on her.  At the risk of tempting fate, it appears that the glass is AT LEAST half full.  Anyone who last saw Ilana a week or so before she got sick, and had no knowledge of what happened to her afterwards, would probably be somewhat horrified to see what has happened to her.  However, anyone who last saw her a week after, and had no knowledge of anything since, would likely be relieved, maybe even a bit thrilled, to see how much progress she’s made.  While she’ll likely never be able to have a “normal” conversation- she processes things slowly, and speaks even more slowly- she can nevertheless speak relatively clearly, and in complete sentences.  (She couldn’t speak AT ALL for several months.)  In a similar vein, she walks a little bit crooked and moves in a disjointed manner, vaguely reminiscent of Johnny Depp’s Captain Jack Sparrow.  But this is still light years ahead of the girl who struggled to move from one side of the BED to the other for nearly a month, then spent months more not being able to take a step without an adult nearby to catch her, like someone putting on ice-skates for the first time.  It’s impossible to exaggerate how much of that is due to Ilana herself, a girl who literally doesn’t know how to quit- and yes, the word “literally” is being used here the way it was meant to be.  The only thing that stops Ilana from working at ANYTHING she is determined to accomplish, is if someone stops her by force.  How someone who’s had so much cruelly taken away from her, let alone at such a young age, can be so determined escapes me, but I’m very grateful for it.


Her relationship with her younger brother, Evan, has also been altered pretty dramatically.  Before she got sick, Ilana was like any older sister to their younger brother- fiercely protective, yet completely intolerant of any nonsense, real or perceived.  But once Ilana’s abilities became compromised, Evan reacted strongly to the situation, sometimes even violently.  He was about as caring a toddler as anyone can imagine…but he was still a toddler.  He was old enough to see something had gone wrong with Ilana, yet not old enough to understand WHAT had gone wrong with Ilana.  Sometimes, it seemed like he would just do things to get her to “snap out of it,” like throw dolls at her head.  Thankfully, he’s outgrown this- or maybe just been yelled at enough to know he can’t do it anymore- but also capitalizes on the fact that Ilana can’t stop him, whenever he wants his way.  Given that he was 3 and a half at the time she got sick, and is now 5 and a half, he probably has virtually no memory of a time when it was any other way.  So, it’s up to the adults in his life to continue to explain to him, as compassionately as possible, that HE needs to act like the older sibling.  He loves Ilana very much, and looks out for her in a way well beyond his years, so this should be an increasingly easier concept for him to latch onto.

On a personal note, I get a sort of twisted comfort out of the fact that not every struggle Ilana faces is a result of her illness.  Even when healthy, her coordination was kind of a mess, and she often looked lost during athletic activities.  This was a concern at the time, but something about the fact that this is who she’s always been, versus the idea that it was something taken away from her, is somewhat reassuring, ironically.  Unfortunately, the same can’t really be said about her mind, as she used to be a razor sharp thinker.  Now, she has trouble adding numbers larger than one digit long.  But it doesn’t stop her from persisting, and often succeeding.  Thank goodness the sickness didn’t take THAT away from her.

Most of important of all is that her personality, particularly her spirit, were least affected by her illness.  In addition to being determined, she has an unparalleled imagination, and a bright, optimistic outlook that she would have every right to lose, given all that has happened to her.  Thankfully, she hasn’t.

As for what lies ahead?  Again, it’s tough to say ANYTHING, at the risk of tempting fate.  But the future seems clearer, and dare I say, a little brighter, than it did the last time this site was updated.  Ilana has a lot of people who love her and care about her, and as long as she can stay healthy from this point forward, we can continue to be hopeful for her future, and proud of all that she’s already achieved in her young and challenging life.



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