A doctor’s retirement, and those stairs we climbed for Rett syndrome
As my daughter loses Dr. Sasha, we wonder what other losses lie ahead
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There aren’t many doctors who specialize in Rett syndrome, my daughter Abby’s disability, and so earlier this year when we got word that Dr. Sasha was retiring, it was quite a blow to our household. Not only had she long been a steady hand in Abby’s caregiving circle, but she also advanced the broader cause of Rett syndrome. We have especially fond memories of the stair climbs she was instrumental in organizing, a literal raising up of Rett syndrome and those who struggle with it.
Aleksandra Jacobs (everyone called her Dr. Sasha) directed the Rett Syndrome Center at Montefiore Einstein Medical Center in New York City for years. Getting into the Bronx from our home in New Jersey for an office visit with her was a pain in the butt, but once we were there she could always be counted on for no-nonsense advice about Abby’s medicines and things like whether this or that new experimental treatment was worth trying.
And she was at the center of one of the more memorable awareness-raising events we participated in for Rett syndrome, the annual Blue Sky Girls Day stair climb in New York.
A ‘reach for the sky’ event
For several years beginning about 15 years ago, Rett syndrome families would gather at the Tweed Courthouse building in Manhattan and, while cameras recorded the festivities, the girls (this was before the realization that some males have Rett syndrome) would climb the stairs and “reach for the sky” as a symbol of perseverance and hope.
Abby, unlike many with Rett syndrome, can walk and made the climb on her own, but those who were in wheelchairs were carried up the incline, often in their chairs, by muscular New York City police officers, firefighters and other first responders. I don’t know how much awareness was raised, whatever that means, but a grand time was had by all.
Looking down from Abby’s vantage point atop the Tweed Courthouse steps at the Blue Sky event in October 2011. (Photo by Neil Genzlinger)
The point of this column, though, isn’t to pay tribute to Dr. Sasha, which others have already done; the International Rett Syndrome Foundation, in a post on Facebook last month, said she “has helped countless families navigate complex medical needs with expertise, compassion, and a deep understanding of the Rett journey.”
The point here is that we parents of older Rett dependents — Abby is 29 — spend a lot of time worrying about what will happen when we’re no longer around, but we don’t think about the fact that none of the other pillars in Abby’s life are permanent, either.
Abby has been through a number of doctors, physical therapists, aides, and so on over the decades, not to mention all the teachers she left behind when she aged out of the school system. Each left a void, few of which we were prepared for and some of which took us years to fill. The pool of people who want to work with patients/clients like Abby is limited, and finding the gems in that pool is hard.
So, yes, we should be devoting a lot of time to figuring out what will happen to Abby once we’re gone, but perhaps we should think a little more about what the heck we’re going to do if the beloved dentist who has treated her for decades ever retires.
Later this year, we have an appointment with a well-regarded specialist in Philadelphia who we hope will become Abby’s new Dr. Sasha. Maybe afterward, I’ll take her over to the famous Rocky Steps at the Philadelphia Museum of Art. You know, the ones Sylvester Stallone ran up in the 1976 movie.
Note: Rett Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rett Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Rett syndrome.
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