Lillian's Medical Fund
Donation protected
Lillian Stilwell was born 8 weeks early on 9/22/15
What sets Lillian apart from other preemie babies is that she has tonic seizures (stiffening of the arms or legs).
After consulting with several doctors and going through intensive testing, plus surgery, she was finally diagnosed with a disorder called Ohtahara Syndrome (OS). This is a rare epilepsy syndrome. It has been over 15 years since the hospital had a patient with the same disorder.
It is unknown how long she has been having seizures, but seizures can occur during the last three months of pregnancy.
As for treatment, seizures are often resistant to epilepsy medicines. Anticonvulsant drugs and glucocorticoid steroids may be used to try to control the seizures, but their effectiveness is limited.
Usually after treatment, Lillian is excessively sleepy and often has difficulty with feeding. As time goes on, her seizures are becoming more frequent lasting a few seconds to several minutes.
Some children with OS may die within the first 2 years of life. Those who survive are typically left with severe physical and cognitive disabilities.
Her frequent treatments and testings have reached a costly price. We as Stephanie's co-workers would like to ask for aid in supporting baby Lillian's hospital bills.
Please help support Lillian Stilwell as she goes through medical treatment--any amount will be immensely appreciated.
Updated 11/14/15: Unfortunately there is not a cure for Lillian's condition and she will be released from the NICU to spend her last days in her home with her family.
Updated 01/19/16: Against all odds, Lillian is holding in strong! She has improved immensely and is no longer considered terminal. The hospital is slowly adjusting her medications she has been on to best control her seizures; she has her good days and she has her bad days. Unfortunately due to the stress of the situation, Stephanie has become a single mother and is going through a legal battle for Lillian.
What sets Lillian apart from other preemie babies is that she has tonic seizures (stiffening of the arms or legs).
After consulting with several doctors and going through intensive testing, plus surgery, she was finally diagnosed with a disorder called Ohtahara Syndrome (OS). This is a rare epilepsy syndrome. It has been over 15 years since the hospital had a patient with the same disorder.
It is unknown how long she has been having seizures, but seizures can occur during the last three months of pregnancy.
As for treatment, seizures are often resistant to epilepsy medicines. Anticonvulsant drugs and glucocorticoid steroids may be used to try to control the seizures, but their effectiveness is limited.
Usually after treatment, Lillian is excessively sleepy and often has difficulty with feeding. As time goes on, her seizures are becoming more frequent lasting a few seconds to several minutes.
Some children with OS may die within the first 2 years of life. Those who survive are typically left with severe physical and cognitive disabilities.
Her frequent treatments and testings have reached a costly price. We as Stephanie's co-workers would like to ask for aid in supporting baby Lillian's hospital bills.
Please help support Lillian Stilwell as she goes through medical treatment--any amount will be immensely appreciated.
Updated 11/14/15: Unfortunately there is not a cure for Lillian's condition and she will be released from the NICU to spend her last days in her home with her family.
Updated 01/19/16: Against all odds, Lillian is holding in strong! She has improved immensely and is no longer considered terminal. The hospital is slowly adjusting her medications she has been on to best control her seizures; she has her good days and she has her bad days. Unfortunately due to the stress of the situation, Stephanie has become a single mother and is going through a legal battle for Lillian.
Organizer and beneficiary
Christina Thanadabouth
Organizer
Boise, ID
Stephanie Stilwell
Beneficiary