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October Willow Lezon

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I would like to start by thanking everyone SO MUCH for participating in Tobi's last fundraiser.  We raised an unexpected but very much needed sum of money to help cover her extensive medical care.  I wish we could say that it was enough to last, but unfortunately, with Tobi being sent back to Lurie, medical bills, transportation, and specialty treatments... the money goes a lot faster than any of us would have hoped. 

We have received a lot of requests from loved ones to be able to donate again and the generosity has been staggering.  If you are able to once again help, THANK YOU.  If you're able to help in any other way, whether it be prayers and well wishes, or just showing your love and support, we cannot be more appreciative.  Below is Tobi's story for those who are unfamiliar.  Please visit her CaringBridge website for regular updates from Nicole and Jason!

https://www.caringbridge.org/visit/octoberwillowlezon

October Willow Lezon - affectionately known as "Tobi" - is one tough little cookie (a super cute one too).  She was born with several extremely rare and extremely challenging physical conditions, and has spent nearly all of her life in the hospital.  She is an absolutely beautiful and incredible little girl, and she was blessed with incredibly dedicated and loving parents who give her more love and support than any child could ask for.

Tobi is at Lurie's Children's Hospital in Chicago.  She was able to come home for nearly 3 weeks at Christmas time (a true Christmas miracle), but unfortunately, due to the complexity of her care, was not able to remain there.  As you can imagine, this is incredibly difficult for her parents Nicole and Jason.  At least one of them drives downtown every single day to spend time with their little girl.  We are hoping that we will be able to get October back home soon.  Below is some information on Tobi's conditions.

Congenital Myopathy
October has several health challenges, one being Congenital Myopathy.  This is a genetic neuromuscular disorder that causes contracture of the muscles.  This causes challenges with movement of the hands, fingers, arms, and legs. Unfortunately, there is no cure for this disorder, but Tobi has been undergoing physical therapy since her birth to help improve her mobility in her joints.  She has had custom braces made that will help in her development, and through the dedication of her parents and her medical team, Tobi continues to show improvements.

Chronic Lung Disease
Tobi was born 6 weeks premature on February 18th, 2020.  Her lungs were not fully developed and she was unable to breathe on her own, so she had to be intubated.  After exploring all options to get her breathing on her own, Tobi's medical team made the difficult decision to perform a tracheostomy.  This means the doctors surgically inserted a breathing tube into her throat, and she is connected to a ventilator at all times.  Thanks to this incredible procedure, she no longer has to have a tube in her throat, and we're all able to see her beautiful face without tubes going into her mouth (which gives us fantastic visibility to some of the chunkiest cheeks you'll ever want to squeeze).  The ventilator will be in place for Tobi for the foreseeable future, but we believe that this strong girl will someday be able to breathe on her own. Until then, she will need someone to be awake with her all hours of the day, and she will require in-home medical care.

Dislocated Hips
Due to the lack of flexibility in Tobi’s joints, her hips became dislocated while in the womb.  Because of her competing medical challenges, this has not yet been corrected yet.  The hope is that someday they will be able to be surgically repaired.

Hearing Loss
Tobi has mild to moderate hearing loss requiring hearing aids.  She does well with them and loves hearing mommy and daddy's voices.  As well as some Disney movies
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    Organizer and beneficiary

    Stephanie Vincenti
    Organizer
    Carol Stream, IL
    Nicole Lezon
    Beneficiary

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