#TeamElla-Bean
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Ella Bean is the baby of a blended family of 9. She is the youngest of 7 siblings and an intelligent, witty, imaginative pre-schooler who plays hard, loves fiercely, and sings the day away. She has Intractable Epilepsy.
While decorating the house for her sister's 10th birthday, at only 2-years-old, Ella had her 1st convulsive seizure that lasted nearly 10 minutes. Those 10 minutes seemed to last an eternity and have forever changed our lives.
Ella had 2 more convulsive seizures within the next few weeks and was promptly diagnosed with Generalized Convulsive Epilepsy. After multiple MRI's, CT scans, EEG's, labwork, and 2 extended stays in the EMU at Dell Children's Hospital, it was determined that she has no structural brain abnormalities or tumors, nor does she have any of the typical genetic markers for an Epilepsy syndrome. Ella's condition is characterized by Tonic-Clonic Seizures, Absence Seizures, and Myoclonic Seizures. She can have as few as 10, or more than 50, seizures of varying types and degrees throughout the day.
Because her seizures do not begin in a single location within her brain, Ella is not a candidate for neurosurgery. She is also not a good candidate for the Ketogenic or other diet therapies. CBD oil is not yet available for all patients with Epilepsy, so that is not option. Ella's Epileptologists have treated her conservatively and then aggressively with medication. She has had 2 trials of Keppra, Zonegran, Lamictal, Onfi, and finally Depakote. Each medication has it's own debilitating side-effects, and some of the combinations severely impacted her quality of life. None of these medications effectively control her seizures.
Due to the complexity of Ella's disorder, we found ourselves at Texas Children's Hospital where she receives excellent care by Dr. Malphrus, and on July 5th, our Baby Bean underwent surgery to have the Vagus Nerve Stimulator implanted. It will take many months and multiple visits to determine if there is a benefit for her.
Due to the VNS implant, Ella has 7 appointments with her Epileptologist scheduled between now and August 22nd. Each one of those visits is in Houston. Each of those visits has a $50 copay, plus the gas, food, and motion sickness medication required to travel back and forth, in addition to the 30% patient financial responsibility. She also has appointments scheduled with her Optometrist and ENT in the next two weeks.
There is an increased risk of SUDEP (Sudden Unexplained Death in Epilepsy Patients) in patients with uncontrolled seizures. Due to Ella having a number of seizures in her sleep, we would love to purchase a SAMi sleep activity monitor so that she is safely monitored and mom can get some much needed, uninterrupted sleep. The monitoring system is $1,399.00.
Our previous medical debt of $43,000 to St. David's and $62,000 to Dell Children's has now increased by $80,000 to Texas Children's. In addition, Dr. Malphrus ordered a full genome DNA sequence test because she believes the answer to successfully treating Ella lies in her genes. Originally, our insurance, BCBS, approved it and once testing was complete, they denied the claim, and our appeals. The test results are available, but we can never access them unless we pay $16,000.00 out-of-pocket for the test.
We have been blessed with wonderful support from family and friends. Ella Bean has an excellent, responsive medical team. Our children have been gracious, understanding, and compassionate as we have made Ella's medical care a priority in our lives. Our eldest son schedules his work availability around Ella's appointments and either accompanies us to Houston or cares for his siblings left behind.
Our family is focused on Ella's health, and while both my husband and I work and have insurance, it is not enough to cover the expenses associated with her care, and our other children are affected. Due to Ella's immediate needs, one of our middle daughters, who has an Autism Spectrum Disorder, has had to forgo private therapy. Our kiddos are not able to participate in extracurricular activities, and we spend frugally. Two of our youngest daughters have agreed to go without birthday parties this year as a contribution to our family expenses.
At this point, we have exhausted our financial resources...and my parent's financial resources. We have borrowed...and exhausted those resources. Without reaching out for help, we are at a loss as to how we can support our family and continue to pay for Ella's treatment. Any gift towards Ella's care enables us to continue receiving quality care for her, and allows us focus on our family and the needs of all of our children.
We thank you for taking the time to invest in Ella! Whether you are choosing to donate to her care, or are offering your prayers, or are sharing her story with others who may be willing to help, we are so inredibly thankful. It is truly the kindness, generosity, and compassion of everyone that makes a village.
While decorating the house for her sister's 10th birthday, at only 2-years-old, Ella had her 1st convulsive seizure that lasted nearly 10 minutes. Those 10 minutes seemed to last an eternity and have forever changed our lives.
Ella had 2 more convulsive seizures within the next few weeks and was promptly diagnosed with Generalized Convulsive Epilepsy. After multiple MRI's, CT scans, EEG's, labwork, and 2 extended stays in the EMU at Dell Children's Hospital, it was determined that she has no structural brain abnormalities or tumors, nor does she have any of the typical genetic markers for an Epilepsy syndrome. Ella's condition is characterized by Tonic-Clonic Seizures, Absence Seizures, and Myoclonic Seizures. She can have as few as 10, or more than 50, seizures of varying types and degrees throughout the day.
Because her seizures do not begin in a single location within her brain, Ella is not a candidate for neurosurgery. She is also not a good candidate for the Ketogenic or other diet therapies. CBD oil is not yet available for all patients with Epilepsy, so that is not option. Ella's Epileptologists have treated her conservatively and then aggressively with medication. She has had 2 trials of Keppra, Zonegran, Lamictal, Onfi, and finally Depakote. Each medication has it's own debilitating side-effects, and some of the combinations severely impacted her quality of life. None of these medications effectively control her seizures.
Due to the complexity of Ella's disorder, we found ourselves at Texas Children's Hospital where she receives excellent care by Dr. Malphrus, and on July 5th, our Baby Bean underwent surgery to have the Vagus Nerve Stimulator implanted. It will take many months and multiple visits to determine if there is a benefit for her.
Due to the VNS implant, Ella has 7 appointments with her Epileptologist scheduled between now and August 22nd. Each one of those visits is in Houston. Each of those visits has a $50 copay, plus the gas, food, and motion sickness medication required to travel back and forth, in addition to the 30% patient financial responsibility. She also has appointments scheduled with her Optometrist and ENT in the next two weeks.
There is an increased risk of SUDEP (Sudden Unexplained Death in Epilepsy Patients) in patients with uncontrolled seizures. Due to Ella having a number of seizures in her sleep, we would love to purchase a SAMi sleep activity monitor so that she is safely monitored and mom can get some much needed, uninterrupted sleep. The monitoring system is $1,399.00.
Our previous medical debt of $43,000 to St. David's and $62,000 to Dell Children's has now increased by $80,000 to Texas Children's. In addition, Dr. Malphrus ordered a full genome DNA sequence test because she believes the answer to successfully treating Ella lies in her genes. Originally, our insurance, BCBS, approved it and once testing was complete, they denied the claim, and our appeals. The test results are available, but we can never access them unless we pay $16,000.00 out-of-pocket for the test.
We have been blessed with wonderful support from family and friends. Ella Bean has an excellent, responsive medical team. Our children have been gracious, understanding, and compassionate as we have made Ella's medical care a priority in our lives. Our eldest son schedules his work availability around Ella's appointments and either accompanies us to Houston or cares for his siblings left behind.
Our family is focused on Ella's health, and while both my husband and I work and have insurance, it is not enough to cover the expenses associated with her care, and our other children are affected. Due to Ella's immediate needs, one of our middle daughters, who has an Autism Spectrum Disorder, has had to forgo private therapy. Our kiddos are not able to participate in extracurricular activities, and we spend frugally. Two of our youngest daughters have agreed to go without birthday parties this year as a contribution to our family expenses.
At this point, we have exhausted our financial resources...and my parent's financial resources. We have borrowed...and exhausted those resources. Without reaching out for help, we are at a loss as to how we can support our family and continue to pay for Ella's treatment. Any gift towards Ella's care enables us to continue receiving quality care for her, and allows us focus on our family and the needs of all of our children.
We thank you for taking the time to invest in Ella! Whether you are choosing to donate to her care, or are offering your prayers, or are sharing her story with others who may be willing to help, we are so inredibly thankful. It is truly the kindness, generosity, and compassion of everyone that makes a village.
Organizer
Mia Solis
Organizer
Round Rock, TX