Karing for Kycen
Donation protected
Kycen was just 9 months old when he was diagnosed with Opsoclonus-Myoclonus Syndrome (OMS) with ganglionuroblastoma. OMS is a rare autoimmune neurological disorder often accompanied by childhood cancer.
At around 4 months old, his parents, Justin Schimandle and Stephanie Kaspar, both teachers, (West Aurora and Oswego respectively) noticed he wasn’t doing the things he was supposed to be doing, Kycen was initially diagnosed with infantile spasms, a seizure disorder but the treatment wasn’t working, and they noticed other symptoms, such as abnormal eye movements.
Stephanie took a video of Kycen’s “dancing eyes” and sent it to his neurologist, who was able to diagnose the infant with OMS.
It’s really rare, 1 in 100.000! Luckily, Kycen’s doctors at Central DuPage Hospital were familiar with the disease.
Now 21 months old, Kycen continues to fight the disease and last year, doctors found a mass in Kycen’s abdomen that was diagnosed as a partially malignant ganglionneuroblastoma. The mass was removed in May.
Now, in addition to traveling to Central DuPage Hospital once a week to treat his OMS, Kycen is also undergoing IVVG, swallow therapy, physical therapy, and chemotherapy at the University of Chicago Medical Center.
Kycen’s health issues have also led to severe developmental delays but the doctors are hopeful that with constant treatment he will get where he needs to be.
While it's possible that he may be wheelchair bound, with treatment, it is also possible for children with his conditions to improve and catch up to normal average motor skills of other kids by the age of 7 or 8. Justin and Stephanie along with family and friends are praying that he responds to treatment.
Kycen has so many ER visits, hospital stays, treatments and therapies that must be done in a hospital environment that the family of 5 have exhausted their savings and vacation days with no end in sight.
(Stephanie was fortunate that her coworkers and staff at Long Beach Elementary have been supportive, even donating their days off to her to allow her to take Kycen for treatment last year and that was a GODSEND!)
They are making the best of thier situation but are financially stretched beyond limits as the medical equipment and therapy continues to mount.
We ask that you pray with us and help ease the financial hardship through Kycens treatment so the family can focus on whats really important. Treating thier son so that he realize all that God intended for his life,
At around 4 months old, his parents, Justin Schimandle and Stephanie Kaspar, both teachers, (West Aurora and Oswego respectively) noticed he wasn’t doing the things he was supposed to be doing, Kycen was initially diagnosed with infantile spasms, a seizure disorder but the treatment wasn’t working, and they noticed other symptoms, such as abnormal eye movements.
Stephanie took a video of Kycen’s “dancing eyes” and sent it to his neurologist, who was able to diagnose the infant with OMS.
It’s really rare, 1 in 100.000! Luckily, Kycen’s doctors at Central DuPage Hospital were familiar with the disease.
Now 21 months old, Kycen continues to fight the disease and last year, doctors found a mass in Kycen’s abdomen that was diagnosed as a partially malignant ganglionneuroblastoma. The mass was removed in May.
Now, in addition to traveling to Central DuPage Hospital once a week to treat his OMS, Kycen is also undergoing IVVG, swallow therapy, physical therapy, and chemotherapy at the University of Chicago Medical Center.
Kycen’s health issues have also led to severe developmental delays but the doctors are hopeful that with constant treatment he will get where he needs to be.
While it's possible that he may be wheelchair bound, with treatment, it is also possible for children with his conditions to improve and catch up to normal average motor skills of other kids by the age of 7 or 8. Justin and Stephanie along with family and friends are praying that he responds to treatment.
Kycen has so many ER visits, hospital stays, treatments and therapies that must be done in a hospital environment that the family of 5 have exhausted their savings and vacation days with no end in sight.
(Stephanie was fortunate that her coworkers and staff at Long Beach Elementary have been supportive, even donating their days off to her to allow her to take Kycen for treatment last year and that was a GODSEND!)
They are making the best of thier situation but are financially stretched beyond limits as the medical equipment and therapy continues to mount.
We ask that you pray with us and help ease the financial hardship through Kycens treatment so the family can focus on whats really important. Treating thier son so that he realize all that God intended for his life,
Organizer
Sheila Ann Lewis-Tricarico
Organizer
Plano, IL
