Baby Gracie's Medical Fund

On October 18th after a picture perfect delivery our niece Grace Ann Langton was born.  With a full head of hair and her daddy’s chin Grace was whisked off to the NICU to be monitored due to having inhaled some Meconium.  That is where the story begins.  The following day doctors noticed her having seizures and decided to do an MRI.  That resulted in finding out her brain did not fully develop, however that still did not tell us where the seizures were coming from so they performed an EEG (Electroencephalogram) to determine what exactly was going on with the brain.  It was decided on Monday October 23rd  to move Grace to CCMC (Connecticut Children’s Medical Center) in Hartford, CT where she spent 2 weeks in the NICU.  After being connected to an EEG machine for 5 days  and trying various medications we finally had an answer.  It's an Ohtahara like Syndrome as a result of the SCN2A gene mutation. 

 As you can imagine this was devastating for my sister and brother in law to hear.  Grace is 7 weeks old and she has about 50-100 seizures a day.  She is on medication to help control them but so far what they have tried has not worked.  She is fed through an NG tub and is on oxygen.  She needs around the clock care. 

Grace finally came home on November 6th.  It’s been a struggle for Julie and Tim between administering medications, handling her feedings, trying to get some sleep knowing Grace can have a seizure at any time.

Financially both Tim and Julie need to work so they do have some decisions to make ahead of them.  Funds raised through this Go Fund Me page will help with the cost of medications/medical items not covered by insurance as well as ease the financial burden for Julie and Tim.  Julie has been unable to return to work while caring for Grace during this difficult time and Tim has gone back part time so he can be home to help with Grace’s care.

If you can donate even a $1 it would mean the world to our family, and if not maybe you can share her story and someone else in your circle will be able to help. 

 

Love,

Jackie Cianci (Julie's Sister)
Megan Langton (Julie's sister-in-law)
  • Marcelle Wickson 
    • $50 
    • 43 mos
  • Keith Busch 
    • $100 
    • 43 mos
  • Rebecca Cuneo 
    • $50 
    • 44 mos
  • Alyssa Jones 
    • $50 
    • 44 mos
  • Alyssa Tumino Jones 
    • $50 
    • 44 mos
See all

Organizer and beneficiary

Jackie Warner Cianci 
Organizer
Danbury, CT
Julie Langton 
Beneficiary
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