Over the last few months, Noelle’s development seemed to slow & in February, Stan & Jenny noticed an unusual “head drop” behavior. Upon evaluation at the Yale New Haven Children’s ER, Noelle was admitted for possible seizure activity. Noelle was placed on an EEG for 13 hours & had 4 seizures in that time. Since that day, February 18, Noelle has undergone numerous tests & has been placed on a heavy duty medications to control the seizures. Noelle has been diagnosed with West Syndrome, otherwise known as Infantile Spasms. This very rare condition affects about 1500 babies a year in the US. The underlying cause for Noelle’s condition is unknown & may never be found. For now, the seizures need to be stopped so Noelle’s development can continue to grow.
While inpatient at Yale, the medical team also discovered that Noelle has been aspirating when she drinks her bottle, meaning, the fluid has been going into her lungs & up into her nasal passages. Thankfully, she has never gotten sick from this but moving forward, Noelle requires constant monitoring by an aerodigestive team & adjustments made to her food.
Noelle requires 24/7 observation, occupational, speech/feeding & physical therapy 6+ times a week & weekly EEGs. Due to outstanding medical bills, medication/supplement costs, travel expenses & being present for several appointments each week, Jenny has been unable to work for the last month & therefore the family’s finances have suffered. It is unclear if & when Jenny will be able to return to work. Jenny & Noelle have been living with family in Stamford CT in order to receive more services for Noelle. This has put Stan in a position to work multiple jobs & be away from his family for many days at a time while he lives at their family home an hour away. The future of their living arrangements are unknown & the ability to afford to keep their house is also unknown.
From day one, Noelle has been a fighter, she is “the little embryo that could”- the only embryo of 14 to survive, but she has a very long road ahead with many unforeseen obstacles. Any financial assistance that can be provided to this family is so greatly appreciated.
Help us help baby Noelle
- Katie Miskimmon
- Lisa Parise
- Marilyn Colella
- Toni McGinley
Organizer and beneficiary
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