Rett Syndrome, Lily, and Christine.

LILY & CHRISTINE

Newsworthy: Everyday Acts of Kindness. (2)

A blog series highlighting the art of caregiving.

Photo narrative by: Christine Salerno

©Suzanne Fiore Photography

At the end of May I followed these two incredibly strong ladies for part of their day. I wanted to put a face to a rare disease, that Lily was diagnosed with, called Rett Syndrome. The photos here, along with the story accompanying the photos, were posted at that time.  Her mother, Christine, informed me yesterday that Lily had a setback with her breathing. Some nights it takes her 5 hours to fall asleep because she is either holding her breath or hyperventilating for hours at a time. When she does finally begin to fall asleep, she forgets to breathe and wakes up again gasping for air.

(Christine has written a more detailed description of their journey. Learn more by clicking on this link.)

Lily’s 6th birthday is in a few weeks. You can join me to give her the most meaningful gift by donating to the Rett Syndrome Research Trust here.

I will be following these two courageous girls again in March to continue to bring awareness to the daily obstacles that a Rett syndrome diagnosis brings. Please consider sharing this story so that others can get to know & support Lily & Christine.

These ladies are such an inspiration to me. Why they aren’t on the front page of every newspaper as an example of strength, courage, success, love, and perseverance is a mystery to me. Let’s show Lily and Christine that we support their strength and bravery by sharing their story.

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Every morning, I tell Lily that she is the sweetest, smartest, hardest working, bravest 5 year old I know.  

And once you hear a bit about her story, you’ll see why this is true.

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You see, Lily has Rett Syndrome.  Likely you’ve never heard of it.  This is how it’s sometimes described: ‘imagine a girl with the symptoms of Parkinsons, Crohns Disease, Epilepsy, Severe Anxiety and Cerebral Palsy all in one little girl’.  It’s pretty devastating.  Most girls that have Rett never walk, never talk, need feeding tubes, have limited to no hand function and are on multiple medications to ease symptoms.

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Lily is described as being on the high functioning side of Rett Syndrome.  Lily walks (somewhat unsteadily, but independently for the most part), has some words that come and go, has some hand function and can eat normally.  She’s unable to learn sign language because her hands don’t function well, but thanks to technology, I’m able to communicate with this kiddo.  

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Though Rett Syndrome impacts almost EVERY aspect of her body, it hasn’t impacted her intellect.  Up until recently it was believed that girls with Rett Syndrome were cognitively impaired, but – because of amazing technology – researchers, teachers and parents (though most parents already knew this) realized that these girls are smart. During the week, Lily goes to a special needs preschool where she has upwards of 4 therapy sessions a day.  Once she gets home, she has another 2-4 sessions throughout the evening. I tell people that she’s busier than the CEO of the company I work for.  This kid works hard.  And she has to.  If we don’t constantly keep at the skills she has, she will lose them.  

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Lily needs 24/7 constant care and supervision.  She can’t walk up and down stairs independently.  Opening and closing doors isn’t possible.

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On the weekends, I like to let Lily choose what to do, and I don’t push her too hard.  Usually it means waking up early, having her morning smoothie, listening to music, going for a walk, and picking out flowers for our apartment.

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Lily communicates with her eyes.  It’s amazing how much she can get across with one glance.

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Even though Lily has Rett Syndrome, she is still a kid, a 5 year old kid.  And she’s constantly pushing boundaries, seeing what she can get away with – like walking into the street.

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SFiore_LilyChrisDocumentary12BWBlog Usually, I’ll make her lunch at home.  She’s on a restrictive diet as girls with Rett have mal-absorbtion issues on top of GI issues so I do a LOT of cooking and prepping.  Sometimes in the evening, I’ll take her out to dinner.  She’s extremely social and likes to make her way around the restaurant, and introduce herself in her Lily way (which usually means walking up to the person, smiling into their face and then looking at the food on their plate). SFiore_LilyChrisDocumentary57Blog

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She needs help feeding herself.  She can no longer hold a cup to drink from. 

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Music is really important to Lily.  One of her occupational therapists (she has 4) described that as Lily doesn’t have an internal equilibrium, music acts as that equilibrium which soothes and centers her.

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We have a lot of fun throughout the day.

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SFiore_LilyChrisDocumentary6BlogHaving a child with special needs opens up a whole new world to a parent.  Some of it is devastating.  But some of it is magical.  For me, and for Lily, we try to focus on the magical.

~Christine

If you’d like to learn more about Rett Syndrome, click here.

Comments
  • Keli Bayrouty

    This is so beautiful. I started following Lily awhile ago. I have a 22 month old little girl who the neurologist believes has genetic issues but insurance won’t cover the costs of genetic testing. While we are battling them, Retro has crossed our minds more than once.

    Once again, thank you for sharing this. This is so beautifully captured.

    • Thank you for your kind words Keli. I am sorry to hear about your challenges with insurance for your little girl. How infuriating. I will keep you and your daughter in my thoughts as you look for answers. Feel free to let me know of the outcome for extra support either way. Wishing you and your family health and happiness.

  • Keli Bayrouty

    Retts not retro

  • Beverly Salerno

    This is a beautiful AND educational photo essay. I hope it is seen by many, many, people. There is so much to learn from this about love and challenges.