Joey Chorzempa

Hello everyone.  Some help and prayers are needed for the Chorzempa family.  Joey Chorzempa was diagnosed with tuberous sclerosis complex at the age of 3 months after having multiple unexplained seizures.  Below  I will include more information about this genetic disorder.  Things were going great and the doctors were very pleased with Joey's development and lack of seizures.  On September 5th, 2018 Joey went into a Grand Mal "status" seizure that lasted over 90 minutes.  He was rushed to Yale Children's Hospital, where he was placed into a medically induced coma to prevent brain swelling.  After about 2 weeks in Yale Children's Hospital, he was finally transfered to Boston Children's Hospital where he was originally diagnosed and treated for TSC.  Now in care of Boston Children's, they have controlled the seizures and Joey has begun physical therapy.  He has lost most function of the left side of his body but he is back to being the Joey we all love.  He is being followed by Boston Children's and is currently  beginning his inpatient physical therapy in New Britain CT.  

     This has been a very exhausting experience for the whole family as Andrew and Brenna also have 3-year-old twins named Lily and Andrew.  They have been traveling back and forth between Boston Children's and their home in CT swapping shifts.  They are accruing many bills from travel, to meals on the road, to the upcoming medical bills.   They have been blessed with very close family and friends to help with child care, puppy sitting and the everyday chores.  Many people have been asking how they can help and any donation would be a great help for current and future expenses.  Thank you all for taking the time to read about the unfortunate recent events and please keep Joey in your prayers.  This is a going to be a long road ahead.

Andrew and Brenna have asked to help bring more awareness to this rare genetic disorder.  The following is the definition from the tsalliance website.  If you would like to learn more please visit www.tsalliance.org

What is TSC:
First described in the 1880s by French neurologist Désiré-Magloire Bourneville, tuberous sclerosis complex (TSC) is a genetic disorder that causes tumors to form in many different organs, primarily in the brain, eyes, heart, kidney, skin and lungs. The aspects of TSC that most strongly impact quality of life are generally associated with the brain: seizures, developmental delay, intellectual disability and autism. However, many people with TSC are living independent, healthy lives and enjoying challenging professions such as doctors, lawyers, educators and researchers.  The incidence and severity of the various aspects of TSC can vary widely between individuals—even between identical twins.
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Organizer and beneficiary

Ryan Dellavecchia 
Organizer
Harwinton, CT
Drew Chorzempa 
Beneficiary
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