Kayah's Battle Against Infantile Spasms

Kayah is our 9 month old Epilepsy Warrior. 

 

She was born full term and was developing normally until she turned 8-months old. At that time her energy levels dropped and her social smile faded. By 8.5-months old, her parents witnessed her first terrifying seizures.

 

She was very lucky to get a quick diagnosis at Hackensack Children’s Hospital. She was found to have a tumor (suspected to be a DNET surrounded by Focal Cortical Dysplasia) in her brain causing focal seizures and epileptic spasms. Two RARE conditions that have been proving quite tricky to treat with a high probability of causing developmental delays and possible regression.

 

Right now she is under the care of an Epileptologist, Cardiologist, Geneticist and Ophthalmologist. Kayah and her parents are slowly gearing up for possible neurosurgery in the near future to remove this brain tumor. She will need a whole team behind her including physical therapy, speech therapy, etc

 

It is imperative that Kayah’s parents, Karen and Peter, are able to concentrate on her treatment and recovery to minimize developmental delays. Karen has taken an unpaid leave of absence from her work as a Physician so that she can provide around the clock medical care at home and for the many hours spent at doctor's appointments/hospital visits/therapy sessions.   

We are hoping the funds donated will help to  alleviate at least some of the financial burden from medical expenses and loss of income as their focus needs to be 100% on their sweet beautiful girl.  Please help in any way you can by donating, reaching out, praying and sending strength to Kayah's parents. All donations received will go directly to Karen Piwowar and Peter Ching for Kayah's medical care.

 

We can't express how grateful we are for all your love, support and prayers.

 

Infantile spasms is a rare, but very serious condition. To learn more about infantile spasms, go to www.isweek.org 

You can also follow Kayah's instagram for updates and a way to send love and support from afar <3

https://instagram.com/infantile_spasm_journey?utm_medium=copy_link