Strength for Stella Grace
Donation protected
Stella Grace is a two month old girl from Fenton, Michigan, born on June 5, 2018 to the parents of Stephanie and Jason Ostrander and three older brothers.
At just 4 days old, her mother noticed signs of a seizure while feeding her. Stephanie is a registered nurse at McLaren Hospital and was quick to bring her baby to her doctor for help.
After many tests doctors sent them home with no answers on why the seizures were occurring.
The Ostrander's were not home for long as Stella was constantly being rushed to the hospital to get help with her uncontrollable seizures.
While they were there the hospital continued to run many tests like an EEG, blood work, and a spinal tap. Finally after much fight from Stephanie and Jason a genetic panel was ordered.
On August 6th, 2018 the family received the results to the genetic panel test which officially diagnosed her with a severe and extremely rare form of Epilepsy, called Migrating Partial Seizures of Infancy.
For Stella, this is caused by a gene mutation of the KCNT1 gene that occurred spontaneously during development. This mutation is something that is not able to be detected through ultrasound or blood work, while her mother Stephanie was pregnant.
This condition causes Stella to have uncontrollable seizures that require constant medical treatment.
As of right now there is no cure for KCNT1. However Stella's team of doctors having been very proactive in their approach by trying out experimental treatments. Currently she has been started on the Ketogenic diet. Next step is a drug called Quinidine (she is the youngest baby to ever do this!) and cannabis oil which has been show to have great success with the treatment of seizures.
Needless to say all of your love, support, and prayers mean so much to the Ostrander’s! If you are also able to offer any financial support your contribution will help to pay for Stella's treatment for this disease. Which includes insurance deductibles, co-pays and any out of pocket expenses for treatments, medication and supplements not covered by insurance. Even the smallest donations will help.
Currently she is at Children's Hospital in ICU battling this genetic disease. We ask that you please respect the privacy of the family so can they can focus on their daughter during this difficult time.
We thank you for all of your support and will continue to update you on Stella's journey:)
At just 4 days old, her mother noticed signs of a seizure while feeding her. Stephanie is a registered nurse at McLaren Hospital and was quick to bring her baby to her doctor for help.
After many tests doctors sent them home with no answers on why the seizures were occurring.
The Ostrander's were not home for long as Stella was constantly being rushed to the hospital to get help with her uncontrollable seizures.
While they were there the hospital continued to run many tests like an EEG, blood work, and a spinal tap. Finally after much fight from Stephanie and Jason a genetic panel was ordered.
On August 6th, 2018 the family received the results to the genetic panel test which officially diagnosed her with a severe and extremely rare form of Epilepsy, called Migrating Partial Seizures of Infancy.
For Stella, this is caused by a gene mutation of the KCNT1 gene that occurred spontaneously during development. This mutation is something that is not able to be detected through ultrasound or blood work, while her mother Stephanie was pregnant.
This condition causes Stella to have uncontrollable seizures that require constant medical treatment.
As of right now there is no cure for KCNT1. However Stella's team of doctors having been very proactive in their approach by trying out experimental treatments. Currently she has been started on the Ketogenic diet. Next step is a drug called Quinidine (she is the youngest baby to ever do this!) and cannabis oil which has been show to have great success with the treatment of seizures.
Needless to say all of your love, support, and prayers mean so much to the Ostrander’s! If you are also able to offer any financial support your contribution will help to pay for Stella's treatment for this disease. Which includes insurance deductibles, co-pays and any out of pocket expenses for treatments, medication and supplements not covered by insurance. Even the smallest donations will help.
Currently she is at Children's Hospital in ICU battling this genetic disease. We ask that you please respect the privacy of the family so can they can focus on their daughter during this difficult time.
We thank you for all of your support and will continue to update you on Stella's journey:)
Organizer and beneficiary
Adrienne Harko
Organizer
Fenton, MI
Rachelle Renee Edmunds
Beneficiary
