Aria Rose's Brain Surgeries Fund
Donation protected
Hi! We are Aunt Shannon Gregory, Aunt Molly Reiss and Aunt Brianne Reiss and we are Aria Rose's awesome aunts! :)
Our sweet niece is heading to New York on November 30th to have the first of multiple brain surgeries. Please follow her story on her Facebook page for updates and pictures: www.facebook.com/AriaRoseGregory
Aria's parents will be incurring A LOT of expenses to get their daughter the surgeries she so desperately needs. They were hoping to have any surgery needed during 2015 while their deductible was met for their high-deductible insurance plan, but it looks like they will be having one or more brain surgeries in 2016. Their in-network max out-of-pocket is $10,000. They know that the anesthesiologist group that will be utilized during her surgeries are out-of-network (they don’t get to choose who is used for this) so they will also have their bills to pay out-of-pocket, plus flights, hotel, food and any other expenses they find when they are there.
NYU does have a Ronald McDonald House that they are really hoping to get into for their trips, but they are undergoing renovations and the rooms are currently limited. If they get into the RMH, then their room will only be $35/night. If not, then the cheapest hotel room they have found is right across the street from the hospital (which is amazing), but it is $150 /night. The Epilepsy Center also maintains a few apartments, called FACES apartments, which are completely free if they are open. With such short notice for their first trip, they will not be able to utilize the FACES apartments, but are hoping to be able to reserve one for the 2016 trips. They will also have transportation costs since they will not have a car. The Ronald McDonald House and FACES Apartments are both out of walking distance from the hospital and will require them to use cabs. They wish they could just bunk down with Aria in her hospital room, but with shared rooms, the occupancy and luggage allowed is limited. Unfortunately, their luggage/stroller/car seat will need its own room somewhere else whether they are with it or not.
***FOR COSHOCTON RESIDENTS***
Aria's grandparents, Brian and Amy Reiss, and her aunts, Molly and Brianne, will be hosting a Benefit Dinner/Auction/Band in late January at the Coshocton Moose Lodge for Aria's 2nd surgery. More details to come!!! Watch Aria's Facebook page for updates!!!
We've had many people ask, "How can I help?" or "Where can I donate to assist with medical bills?" Here's the place! Thank you all for your continued love and support of our family! We appreciate each and every one of you!!!
ARIA'S STORY
"The day our daughter was born was one of the happiest and scariest days of our lives. I went to my OB for a routine check-up that quickly turned into an emergency c-section. They couldn’t trace her heartbeat… Aria had an arrhythmia and a murmur in her heart and ended up bouncing into the world 3 weeks early. We were overjoyed to meet our beautiful girl and amazed at how much she looked just like her big brother! Little did we know, our whole world was about to turn upside down.
As Dustin held our 3-day-old, 5 pound girl and I held them both in a puddle of tears and fear, we were told that Aria’s heart was full of tumors. “Rhabdomyomas,” they said (I didn’t even know there was such a word) “We think your daughter has a rare genetic condition called Tuberous Sclerosis Complex. There is a blood test we can run, but it will take a few months to get the results. In the meantime, children with Tuberous Sclerosis Complex will grow benign tumors throughout their bodies and if we were to find tumors in her brain, kidneys or eyes, then we can confirm with a clinical diagnosis.” I couldn’t even breathe. How could our perfect, beautiful, newborn daughter be full of tumors? She was so tiny and sweet with such a big diagnosis hovering over her. And so the testing began….
The next few weeks flew by in a tizzy; MRI’s, ultrasounds and blood draws. At 3 weeks old, we got THE call…. “Your daughter’s brain has more tubers (tumors) than we can count. It is confirmed; she has Tuberous Sclerosis Complex.” I cried for the next 3 months.
At 6 weeks old, the seizures began. Never would we have imagined we would be strong enough to watch our infant daughter endure seizures while we try to comfort her through them; the one thing we have learned over the past almost 2 years is we are much stronger than we ever thought. In the last 19 months, Aria has failed over 16 seizure medications and treatments. Her seizures continue to worsen and each time a new “type” of seizure develops, it is more devastating than the last. She has been in physical and occupational therapy with Help Me Grow since she was 6 weeks old, learning and relearning how to utilize the skills the seizures steal from her. She learned how to roll over 4 times, how to sit up twice, it took months for her to learn to crawl correctly and, at 21 months, walking is still a work in progress. No matter the obstacles Aria has faced, she has always met them with a smile. She is the sweetest, happiest baby and brings so much joy into our lives. She can’t talk yet, but by her smiles and giggles, we know she knows that we adore her and we know she loves us with all her heart.
2 months ago, Aria’s brain started convulsing with generalized (or tonic clonic) seizures. Her diaphragm seized up during these seizures not allowing her to breathe; she turned purple and then blue. It took multiple rounds of rescue medication to stop her seizing. She was life-flighted to Cincinnati Children’s Hospital where she could be treated by her neurology team. She was in stable condition when we left, so I told Dustin to stay home with our son (who was undergoing breathing treatments for his asthma) and I would go with Aria. We would be in constant contact, but both of our children needed their parents, so we had to split up. I will never forget the night of September 1st, 2015 as long as I live.
Around 3 pm, we arrived at Cincinnati Children’s Hospital PEMU and were hooked up to a Video EEG to monitor Aria’s brain waves. At 5 pm, the seizures started and they wouldn’t stop. Numerous rescue meds were given; she just kept seizing and her stats were dropping fast. The nurse turned to me with a look of panic in her eyes and said, “Tiffany, you need to call your husband and tell him to get here…just in case he wants to say goodbye.” Those words still haunt my dreams. Thank GOD above, they were able to stop the seizures that night. They put her on a new med that finally seems to help keep that particularly evil seizure at bay. But we have lived every day since then, holding our breath, waiting ….
When Aria was almost 1 year old, we started exploring the option of brain surgery. She is a very complicated case and still tiny (20 pounds at almost 2); most surgeons would not touch her. We started sending her case out and traveling to different neurologists and neurosurgeons around the country, presenting her case to see if they could surgically help lessen her seizures.
“She is too complicated; surgery won’t help.”
“She is too small to do brain surgery on, maybe when she is older.”
“We can’t figure out where her seizures are coming from, and we can’t do anything surgically until we do.”
Until her case reached Dr. Devinsky and Dr. Weiner at the NYU Epilepsy Center. It took months to gather all of the information they needed from various sources and every new seizure required more information for them to review, BUT finally we heard the words we have been longing to hear: “We think we can help her!”
Aria will be undergoing multiple brain surgeries. We will be traveling to New York on November 30th to start our surgical clearance and pre-op appointments. On December 7th, she will have the first of her surgeries. During the operation, they will be placing bilateral strips on both sides of her brain, directly on the surface. Then they will decrease her medications and these strips will monitor her brain’s activity during her seizures. With the strips being placed directly on her brain, it will give the doctors the best chance to try and determine where her seizures are originating from. It is an invasive form of testing, but external testing (over the skull) has not been able to give them enough information to be able to help her. This surgery is our best chance to find out which of her tubers(tumors) are causing the seizures.
If all goes well, we will be in New York approximately 3 weeks and then return home. If the bilateral strips are able to determine 1 or more focus points, we will return to New York 3-4 weeks after her first surgery for a second surgery. This time, they will be doing a Tuber Resection with Grids, so they will remove the tubers they believe are causing the seizures and place grids on her brain. They will then monitor her brain for a few days to see if they need to remove any of the tissue surrounding the recently removed tuber. Brain tissue can become a source of epileptic charges when it has been around a tuber that is firing off seizures long enough. After they are sure they have gotten everything, they will remove the grids, close her up and send us home. If there are too many active tubers to remove at one time, then we would return a 3rd time to take out the remaining tubers. We won’t know the specifics of any of this until the 1st surgery is performed. We do know that we should be in New York for about 3 weeks with each surgery.
We ask for prayers. Prayers for our precious daughter, for our family, for our son who has to stay in Ohio to attend school while we are gone, and for our extended family and friends who cannot be there with us, but will have our baby girl constantly in their thoughts. We thank you all for your support and love for our Aria Rose! We are blessed to have you in our lives!
-The Gregory Family
Our sweet niece is heading to New York on November 30th to have the first of multiple brain surgeries. Please follow her story on her Facebook page for updates and pictures: www.facebook.com/AriaRoseGregory
Aria's parents will be incurring A LOT of expenses to get their daughter the surgeries she so desperately needs. They were hoping to have any surgery needed during 2015 while their deductible was met for their high-deductible insurance plan, but it looks like they will be having one or more brain surgeries in 2016. Their in-network max out-of-pocket is $10,000. They know that the anesthesiologist group that will be utilized during her surgeries are out-of-network (they don’t get to choose who is used for this) so they will also have their bills to pay out-of-pocket, plus flights, hotel, food and any other expenses they find when they are there.
NYU does have a Ronald McDonald House that they are really hoping to get into for their trips, but they are undergoing renovations and the rooms are currently limited. If they get into the RMH, then their room will only be $35/night. If not, then the cheapest hotel room they have found is right across the street from the hospital (which is amazing), but it is $150 /night. The Epilepsy Center also maintains a few apartments, called FACES apartments, which are completely free if they are open. With such short notice for their first trip, they will not be able to utilize the FACES apartments, but are hoping to be able to reserve one for the 2016 trips. They will also have transportation costs since they will not have a car. The Ronald McDonald House and FACES Apartments are both out of walking distance from the hospital and will require them to use cabs. They wish they could just bunk down with Aria in her hospital room, but with shared rooms, the occupancy and luggage allowed is limited. Unfortunately, their luggage/stroller/car seat will need its own room somewhere else whether they are with it or not.
***FOR COSHOCTON RESIDENTS***
Aria's grandparents, Brian and Amy Reiss, and her aunts, Molly and Brianne, will be hosting a Benefit Dinner/Auction/Band in late January at the Coshocton Moose Lodge for Aria's 2nd surgery. More details to come!!! Watch Aria's Facebook page for updates!!!
We've had many people ask, "How can I help?" or "Where can I donate to assist with medical bills?" Here's the place! Thank you all for your continued love and support of our family! We appreciate each and every one of you!!!
ARIA'S STORY
"The day our daughter was born was one of the happiest and scariest days of our lives. I went to my OB for a routine check-up that quickly turned into an emergency c-section. They couldn’t trace her heartbeat… Aria had an arrhythmia and a murmur in her heart and ended up bouncing into the world 3 weeks early. We were overjoyed to meet our beautiful girl and amazed at how much she looked just like her big brother! Little did we know, our whole world was about to turn upside down.
As Dustin held our 3-day-old, 5 pound girl and I held them both in a puddle of tears and fear, we were told that Aria’s heart was full of tumors. “Rhabdomyomas,” they said (I didn’t even know there was such a word) “We think your daughter has a rare genetic condition called Tuberous Sclerosis Complex. There is a blood test we can run, but it will take a few months to get the results. In the meantime, children with Tuberous Sclerosis Complex will grow benign tumors throughout their bodies and if we were to find tumors in her brain, kidneys or eyes, then we can confirm with a clinical diagnosis.” I couldn’t even breathe. How could our perfect, beautiful, newborn daughter be full of tumors? She was so tiny and sweet with such a big diagnosis hovering over her. And so the testing began….
The next few weeks flew by in a tizzy; MRI’s, ultrasounds and blood draws. At 3 weeks old, we got THE call…. “Your daughter’s brain has more tubers (tumors) than we can count. It is confirmed; she has Tuberous Sclerosis Complex.” I cried for the next 3 months.
At 6 weeks old, the seizures began. Never would we have imagined we would be strong enough to watch our infant daughter endure seizures while we try to comfort her through them; the one thing we have learned over the past almost 2 years is we are much stronger than we ever thought. In the last 19 months, Aria has failed over 16 seizure medications and treatments. Her seizures continue to worsen and each time a new “type” of seizure develops, it is more devastating than the last. She has been in physical and occupational therapy with Help Me Grow since she was 6 weeks old, learning and relearning how to utilize the skills the seizures steal from her. She learned how to roll over 4 times, how to sit up twice, it took months for her to learn to crawl correctly and, at 21 months, walking is still a work in progress. No matter the obstacles Aria has faced, she has always met them with a smile. She is the sweetest, happiest baby and brings so much joy into our lives. She can’t talk yet, but by her smiles and giggles, we know she knows that we adore her and we know she loves us with all her heart.
2 months ago, Aria’s brain started convulsing with generalized (or tonic clonic) seizures. Her diaphragm seized up during these seizures not allowing her to breathe; she turned purple and then blue. It took multiple rounds of rescue medication to stop her seizing. She was life-flighted to Cincinnati Children’s Hospital where she could be treated by her neurology team. She was in stable condition when we left, so I told Dustin to stay home with our son (who was undergoing breathing treatments for his asthma) and I would go with Aria. We would be in constant contact, but both of our children needed their parents, so we had to split up. I will never forget the night of September 1st, 2015 as long as I live.
Around 3 pm, we arrived at Cincinnati Children’s Hospital PEMU and were hooked up to a Video EEG to monitor Aria’s brain waves. At 5 pm, the seizures started and they wouldn’t stop. Numerous rescue meds were given; she just kept seizing and her stats were dropping fast. The nurse turned to me with a look of panic in her eyes and said, “Tiffany, you need to call your husband and tell him to get here…just in case he wants to say goodbye.” Those words still haunt my dreams. Thank GOD above, they were able to stop the seizures that night. They put her on a new med that finally seems to help keep that particularly evil seizure at bay. But we have lived every day since then, holding our breath, waiting ….
When Aria was almost 1 year old, we started exploring the option of brain surgery. She is a very complicated case and still tiny (20 pounds at almost 2); most surgeons would not touch her. We started sending her case out and traveling to different neurologists and neurosurgeons around the country, presenting her case to see if they could surgically help lessen her seizures.
“She is too complicated; surgery won’t help.”
“She is too small to do brain surgery on, maybe when she is older.”
“We can’t figure out where her seizures are coming from, and we can’t do anything surgically until we do.”
Until her case reached Dr. Devinsky and Dr. Weiner at the NYU Epilepsy Center. It took months to gather all of the information they needed from various sources and every new seizure required more information for them to review, BUT finally we heard the words we have been longing to hear: “We think we can help her!”
Aria will be undergoing multiple brain surgeries. We will be traveling to New York on November 30th to start our surgical clearance and pre-op appointments. On December 7th, she will have the first of her surgeries. During the operation, they will be placing bilateral strips on both sides of her brain, directly on the surface. Then they will decrease her medications and these strips will monitor her brain’s activity during her seizures. With the strips being placed directly on her brain, it will give the doctors the best chance to try and determine where her seizures are originating from. It is an invasive form of testing, but external testing (over the skull) has not been able to give them enough information to be able to help her. This surgery is our best chance to find out which of her tubers(tumors) are causing the seizures.
If all goes well, we will be in New York approximately 3 weeks and then return home. If the bilateral strips are able to determine 1 or more focus points, we will return to New York 3-4 weeks after her first surgery for a second surgery. This time, they will be doing a Tuber Resection with Grids, so they will remove the tubers they believe are causing the seizures and place grids on her brain. They will then monitor her brain for a few days to see if they need to remove any of the tissue surrounding the recently removed tuber. Brain tissue can become a source of epileptic charges when it has been around a tuber that is firing off seizures long enough. After they are sure they have gotten everything, they will remove the grids, close her up and send us home. If there are too many active tubers to remove at one time, then we would return a 3rd time to take out the remaining tubers. We won’t know the specifics of any of this until the 1st surgery is performed. We do know that we should be in New York for about 3 weeks with each surgery.
We ask for prayers. Prayers for our precious daughter, for our family, for our son who has to stay in Ohio to attend school while we are gone, and for our extended family and friends who cannot be there with us, but will have our baby girl constantly in their thoughts. We thank you all for your support and love for our Aria Rose! We are blessed to have you in our lives!
-The Gregory Family
Organizer and beneficiary
Shannon Renee
Organizer
Coshocton, OH
Dustin Gregory
Beneficiary