Help for Nove Laffoon's Diagnosis & Recovery
Donation protected
Our dear friends Ana and Peter Laffoon live their lives giving to others—to their family, their neighbors, their community. And now they need our help. Over the last two weeks their youngest daughter Nove has been hospitalized due to unexplained seizures and an extremely quick and devastating deterioration of her health. Continued seizure activity, the loss of her verbal and physical capabilities, and a lack of explanations necessitated a medical evacuation from Jordan, the country they call home, to London for further care. Currently in London, they are now working with a team of specialists to get answers for Nove and to give her the best shot they can for a full recovery.
The costs of Nove’s medical expenses are still adding up, but our initial goal is to raise $15,000 to help cover what insurance will not, including costs from Nove’s hospitalization in Jordan, travel and living expenses in London for their entire family, medical expenses from Nove’s hospitalization in London thus far, and the continued diagnostic testing, monitoring, and rehabilitation costs in the weeks ahead.
Peter and Ana have given so much to every single community they are immersed in, no matter where they are in the world. So many of you have surrounded them during this difficult time with your love and support. Now I hope you’ll join me in taking away the financial burden that is quickly adding up so they can give all of their energy to finding healing for their baby girl. Let’s do what we can to get Nove running after Jed, Ilse, Joel, and Abe again.
Following is Ana’s full account of their urgent situation, detailing how Nove’s health rapidly declined over the past few weeks.
On December 13th, 2019, our family went to the mall to visit Santa Claus. With five kids all five years old and younger, outings are always a big deal—with lots of strollers and baby carriers and bags and snacks and wipes. And bribes, lots of bribes. Well, privileges, our Positive Parenting course would call them—something above and beyond normal life that we all get to enjoy if everyone is kind and cooperative and behaving at least mostly-human. (We have to expect a little animal play with three toddlers, after all.) So we dangled Santa and candy canes in front of our brood and hoped to get in a few Christmas errands on the way. Amazingly enough, presents were bought and lists were checked off and we were on our way to meet jolly St. Nick when I looked down at my fourteen-month-old, Nove, who was wiggling and banging against my chest in her baby carrier. Seeing her face contort and her eyes roll back into her head, I stopped where I was and fumbled for my phone. I noted the time, shoved my fingers under Nove’s jaw, and monitored both time elapsed and pulse as I called my husband, who was finishing shopping at another end of the mall. “Peter, Nove’s having a seizure!”
We never made it to Santa that day. In fact, Christmas has come and gone, and we’re still monitoring Nove, with Santa on hold for next year.
That was Nove’s first febrile seizure. We weren’t too concerned or surprised since her three-year-old brother, my son Abe, also has febrile seizures, and they can run in the family. But after her first episode, a thorough check-up from her doctors, and beginning a round of antibiotics to deal with an ear infection, Nove didn’t get better. Instead, she got worse, getting hotter, sadder, ceasing to walk or sit up, and, finally, having multiple focal seizures (not fever induced), one after the other, in an 18-hour period.
On December 17th, Nove was hospitalized for “unknown causes.” She began a flurry of tests, including EEGs, an MRI, lumbar puncture (spinal tap), blood tests, urine samples, throat swabs, and around-the-clock monitoring. Scans of her brain showed abnormalities, but everything else was coming back normal. This didn’t help us get to any firm conclusions, and the longer we waited for results to point us in some sort of direction, the more Nove failed to thrive. After a few days in the hospital, Nove could no longer command or control any of her limbs, had lost her flourishing vocabulary, and was only able to grunt or groan to communicate with us. Our once very happy and active baby was irritable, in pain, and nine to ten months regressed in her development. When she started to refuse breastfeeding—at that point, her only comfort and source of nutrition—we started to panic.
Although healthcare in Amman, Jordan, where our family calls home, is fairly reliable, none of Nove’s doctors were producing answers. Everyone had opinions and assumptions and guesses, but no tests were giving us specific results. We needed more help, and quickly—access to more aggressive and definitive tests and a team of doctors who were used to diagnosing strange and complicated cases. Her local doctors agreed, afraid she might be losing brain function permanently. A couple days later, Nove and I were flown via medevac from Jordan to England.
I write this now, six days into our stay at The Portland Hospital in London. Nove has seen a handful of specialists and therapists, and is receiving ongoing care and treatment for her severe symptoms as we continue to undergo testing to tell us more about what happened initially.
So far, her first lumbar puncture identified encephalitis (swelling of the brain and spinal cord) from influenza A—a common cold and flu bug. Somehow, this ordinary virus went to her central nervous system (an incredibly rare occurrence) and reeked havoc. Because her symptoms are so severe (clustered focal seizures and loss of limb control), she is braving a slew of additional tests to rule out any autoimmune or metabolic issues that could have made her more susceptible to brain and spine infections in the first place. This is unlikely, but we must be sure to rule out (or prepare for) relapses.
Right now, Nove is coming back to us! Her personality has returned, she is happy and bright and cheerful, and she clearly wants to move and explore like she did only a few weeks back. Her body is lagging behind her mental readiness and enthusiasm, leaving her unable to scoot, crawl, walk, feed herself, or play with toys. However, she is able to sit up by herself now and, as of yesterday, started to use her hands to grasp items placed in them! We rejoice over even the smallest improvements.
Thankfully, our insurance is covering most of the large-ticket, ever-growing items on Nove’s medical record. She has incurred quite the bill in the last two and a half weeks! And with an estimated two to three more weeks in the hospital in London, the amount continues to climb.
We have been in awe at the incredible prayer and emotional support we've received from the very beginning of Nove’s health journey. Hundreds of messages have poured in, encouraging us emotionally, committing to pray for Nove on a daily basis, and asking what our needs are in the midst of all this craziness. Now, we are finally getting a clearer picture of our estimated financial costs and what insurance will and will not cover. And as much as it humbles us to do so, we are asking for help to fill some of the bigger gaps. Personally, we have accrued sizable travel expenses (flights to London for Peter, our kids, and a friend to help wrangle all the toddlers, Airbnb stay for Peter and the kids, childcare costs for decision-making-moments when both parents are needed at the hospital, several tests not covered by insurance, and a slew of physio, occupational, and speech therapy sessions). We can’t be sure what the final cost will be to us personally, as we’re still in the middle of it all, but we have rough figures for the next two weeks. We need to raise at least $15,000.
As daunting as all the fees seem, we don’t want money to be a limiting factor on the help and assistance Nove receives in this very crucial window of time. Of course, no parent would. We are so grateful for your care for our family and fervent prayers for Nove. We truly appreciate your interest in her story, and any financial gift toward helping her heal.
Nove will undergo multiple tests again tomorrow (December 30th), including an MRI, lumbar puncture, and six vials of blood for various tests. She will be put under general anesthesia to make all of this possible. We ask for your continued prayers for our baby girl, and we hope to update you shortly on what we’ve learned and how Nove is progressing.
Thank you again for all your love, care, and support. Our family wishes you a happy New Year as you enter a fresh decade—may 2020 be a year of joy, laugher, and health for you and yours!
Love, Ana and Peter (and Jed, Ilse, Joel, Abe, and Nove)
Nove hospitalized in Amman, Jordan
Nove & Peter at The Portland Hospital in London, England
Christmas at the hospital in London
Abe, Peter, Joel, Ilse, Ana, Nove, Jed Laffoon (left to right, summer 2019)
Nove on her first birthday, October 8, 2019. Let's get that smile back!
The costs of Nove’s medical expenses are still adding up, but our initial goal is to raise $15,000 to help cover what insurance will not, including costs from Nove’s hospitalization in Jordan, travel and living expenses in London for their entire family, medical expenses from Nove’s hospitalization in London thus far, and the continued diagnostic testing, monitoring, and rehabilitation costs in the weeks ahead.
Peter and Ana have given so much to every single community they are immersed in, no matter where they are in the world. So many of you have surrounded them during this difficult time with your love and support. Now I hope you’ll join me in taking away the financial burden that is quickly adding up so they can give all of their energy to finding healing for their baby girl. Let’s do what we can to get Nove running after Jed, Ilse, Joel, and Abe again.
Following is Ana’s full account of their urgent situation, detailing how Nove’s health rapidly declined over the past few weeks.
On December 13th, 2019, our family went to the mall to visit Santa Claus. With five kids all five years old and younger, outings are always a big deal—with lots of strollers and baby carriers and bags and snacks and wipes. And bribes, lots of bribes. Well, privileges, our Positive Parenting course would call them—something above and beyond normal life that we all get to enjoy if everyone is kind and cooperative and behaving at least mostly-human. (We have to expect a little animal play with three toddlers, after all.) So we dangled Santa and candy canes in front of our brood and hoped to get in a few Christmas errands on the way. Amazingly enough, presents were bought and lists were checked off and we were on our way to meet jolly St. Nick when I looked down at my fourteen-month-old, Nove, who was wiggling and banging against my chest in her baby carrier. Seeing her face contort and her eyes roll back into her head, I stopped where I was and fumbled for my phone. I noted the time, shoved my fingers under Nove’s jaw, and monitored both time elapsed and pulse as I called my husband, who was finishing shopping at another end of the mall. “Peter, Nove’s having a seizure!”
We never made it to Santa that day. In fact, Christmas has come and gone, and we’re still monitoring Nove, with Santa on hold for next year.
That was Nove’s first febrile seizure. We weren’t too concerned or surprised since her three-year-old brother, my son Abe, also has febrile seizures, and they can run in the family. But after her first episode, a thorough check-up from her doctors, and beginning a round of antibiotics to deal with an ear infection, Nove didn’t get better. Instead, she got worse, getting hotter, sadder, ceasing to walk or sit up, and, finally, having multiple focal seizures (not fever induced), one after the other, in an 18-hour period.
On December 17th, Nove was hospitalized for “unknown causes.” She began a flurry of tests, including EEGs, an MRI, lumbar puncture (spinal tap), blood tests, urine samples, throat swabs, and around-the-clock monitoring. Scans of her brain showed abnormalities, but everything else was coming back normal. This didn’t help us get to any firm conclusions, and the longer we waited for results to point us in some sort of direction, the more Nove failed to thrive. After a few days in the hospital, Nove could no longer command or control any of her limbs, had lost her flourishing vocabulary, and was only able to grunt or groan to communicate with us. Our once very happy and active baby was irritable, in pain, and nine to ten months regressed in her development. When she started to refuse breastfeeding—at that point, her only comfort and source of nutrition—we started to panic.
Although healthcare in Amman, Jordan, where our family calls home, is fairly reliable, none of Nove’s doctors were producing answers. Everyone had opinions and assumptions and guesses, but no tests were giving us specific results. We needed more help, and quickly—access to more aggressive and definitive tests and a team of doctors who were used to diagnosing strange and complicated cases. Her local doctors agreed, afraid she might be losing brain function permanently. A couple days later, Nove and I were flown via medevac from Jordan to England.
I write this now, six days into our stay at The Portland Hospital in London. Nove has seen a handful of specialists and therapists, and is receiving ongoing care and treatment for her severe symptoms as we continue to undergo testing to tell us more about what happened initially.
So far, her first lumbar puncture identified encephalitis (swelling of the brain and spinal cord) from influenza A—a common cold and flu bug. Somehow, this ordinary virus went to her central nervous system (an incredibly rare occurrence) and reeked havoc. Because her symptoms are so severe (clustered focal seizures and loss of limb control), she is braving a slew of additional tests to rule out any autoimmune or metabolic issues that could have made her more susceptible to brain and spine infections in the first place. This is unlikely, but we must be sure to rule out (or prepare for) relapses.
Right now, Nove is coming back to us! Her personality has returned, she is happy and bright and cheerful, and she clearly wants to move and explore like she did only a few weeks back. Her body is lagging behind her mental readiness and enthusiasm, leaving her unable to scoot, crawl, walk, feed herself, or play with toys. However, she is able to sit up by herself now and, as of yesterday, started to use her hands to grasp items placed in them! We rejoice over even the smallest improvements.
Thankfully, our insurance is covering most of the large-ticket, ever-growing items on Nove’s medical record. She has incurred quite the bill in the last two and a half weeks! And with an estimated two to three more weeks in the hospital in London, the amount continues to climb.
We have been in awe at the incredible prayer and emotional support we've received from the very beginning of Nove’s health journey. Hundreds of messages have poured in, encouraging us emotionally, committing to pray for Nove on a daily basis, and asking what our needs are in the midst of all this craziness. Now, we are finally getting a clearer picture of our estimated financial costs and what insurance will and will not cover. And as much as it humbles us to do so, we are asking for help to fill some of the bigger gaps. Personally, we have accrued sizable travel expenses (flights to London for Peter, our kids, and a friend to help wrangle all the toddlers, Airbnb stay for Peter and the kids, childcare costs for decision-making-moments when both parents are needed at the hospital, several tests not covered by insurance, and a slew of physio, occupational, and speech therapy sessions). We can’t be sure what the final cost will be to us personally, as we’re still in the middle of it all, but we have rough figures for the next two weeks. We need to raise at least $15,000.
As daunting as all the fees seem, we don’t want money to be a limiting factor on the help and assistance Nove receives in this very crucial window of time. Of course, no parent would. We are so grateful for your care for our family and fervent prayers for Nove. We truly appreciate your interest in her story, and any financial gift toward helping her heal.
Nove will undergo multiple tests again tomorrow (December 30th), including an MRI, lumbar puncture, and six vials of blood for various tests. She will be put under general anesthesia to make all of this possible. We ask for your continued prayers for our baby girl, and we hope to update you shortly on what we’ve learned and how Nove is progressing.
Thank you again for all your love, care, and support. Our family wishes you a happy New Year as you enter a fresh decade—may 2020 be a year of joy, laugher, and health for you and yours!
Love, Ana and Peter (and Jed, Ilse, Joel, Abe, and Nove)
Nove hospitalized in Amman, JordanNove & Peter at The Portland Hospital in London, EnglandChristmas at the hospital in LondonAbe, Peter, Joel, Ilse, Ana, Nove, Jed Laffoon (left to right, summer 2019)Nove on her first birthday, October 8, 2019. Let's get that smile back!Organizer and beneficiary
Mallory Carden Fatke
Organizer
Nashville, TN
Ana Laffoon
Beneficiary