Amanda's Medical Fund
Beschermde donatie
My Sister’s 14 yr old daughter has been diagnosed with Idiopathic Acute Transverse Myelitis. Together with Centennial High School Volleyball we are raising funds to help the Duchnowski family with medical bills.
On December 3rd, 2016 around 3:00 am my niece Amanda woke up her parents and said her legs felt funny and experienced burning pain in her lower back. They thought it was a pinched nerve since she played high school and club volleyball with aches and pains common, but this was something much different and within 30 minutes both her legs were completely paralyzed.
Upon arrival at a local emergency room, Guillain-Barré syndrome was first suspected, but after 3 MRI’s and spinal lumbar puncture it appeared there might be blood vessel damage and she was transferred to St. Joseph’s Barrow Neurological Institute in downtown Phoenix for an emergency pediatric angiogram.
The procedure showed no damage, but the head of surgery said he did not know what was causing the paralysis and arranged emergency transport to Phoenix Children’s Hospital for further diagnosis.
Over the course of 3 days in Phoenix Children's Hospital, 2 more MRI's were performed, another spinal lumbar puncture and lot’s of blood work analyzed. Even after this, some of the best pediatric neurologists in the country still did not know why Amanda was paralyzed.
On December 7th, Phoenix Children's Hospital diagnosed Amanda with Idiopathic Acute Transverse Myelitis after ruling out all other possibilities. None of us had ever heard of such a thing and we learned this rare disease literally affects one in a million.
THE TRANSVERSE MYELITIS ASSOCIATION
At Phoenix Children's Hospital the Barrow Neurological Institute pediatric teams began aggressive treatment immediately. She started a 3 day course of super strength steroids and after almost 5 days of complete paralysis; Amanda moved her left foot ever so slightly for the first time.
As days passed she began to move both legs.
Amanda then had a hemodialysis (HD) catheter placed in her chest for plasmapheresis treatments (PLEX).
Her blood plasma was completely exchanged every other day for the next 10 days and she started inpatient Physical and Occupational Therapy as well. During the PLEX treatment and PT/OT she began to experience more movement in her legs and started walking with a walker.
Next she received IVIG infusions for 3 nights in a row and movement improved.
The awesome physical therapy staff at Phoenix Children's Hospital even arranged a field trip to a nearby gym for some aquatic work!
Two days before Christmas she had a Rituxan Infusion treatment and then another on January 5th.
After 5 weeks, spending both Christmas and New Years in the hospital, Amanda finally came home to a warm welcome on January 6th. She is currently going to outpatient physical therapy 3 times a week and is responding well to the treatment.
While still in a wheelchair, she is able to walk short distances with the aid of a walker. Amanda returned to Centennial High School on January 18th and has been to the mall a couple of times with friends since coming home. Getting back to some normal activities has been great for her spirit and mental attitude, which amazingly has been positive through this entire ordeal as seen by her smiling face in almost every picture and video.
Amanda’s full prognosis is unknown, but we are all hoping for a 100% recovery and it will take a very long time for her nerves and muscles to repair the damage caused by this disease. The outpouring of love, prayers and support from family and friends has been overwhelming and truly inspirational. My sister’s family is now entering a new phase of Amanda’s condition as medical claims are being processed. Significant deductibles, and out of pocket expenses for her care are mounting . Any help you can provide will be greatly appreciated! The meaning of the name Amanda is “Worthy of Love” and my niece is certainly that! Thanks for your donation and may God Bless You!
On December 3rd, 2016 around 3:00 am my niece Amanda woke up her parents and said her legs felt funny and experienced burning pain in her lower back. They thought it was a pinched nerve since she played high school and club volleyball with aches and pains common, but this was something much different and within 30 minutes both her legs were completely paralyzed.
Upon arrival at a local emergency room, Guillain-Barré syndrome was first suspected, but after 3 MRI’s and spinal lumbar puncture it appeared there might be blood vessel damage and she was transferred to St. Joseph’s Barrow Neurological Institute in downtown Phoenix for an emergency pediatric angiogram.
The procedure showed no damage, but the head of surgery said he did not know what was causing the paralysis and arranged emergency transport to Phoenix Children’s Hospital for further diagnosis.
Over the course of 3 days in Phoenix Children's Hospital, 2 more MRI's were performed, another spinal lumbar puncture and lot’s of blood work analyzed. Even after this, some of the best pediatric neurologists in the country still did not know why Amanda was paralyzed.
On December 7th, Phoenix Children's Hospital diagnosed Amanda with Idiopathic Acute Transverse Myelitis after ruling out all other possibilities. None of us had ever heard of such a thing and we learned this rare disease literally affects one in a million.
THE TRANSVERSE MYELITIS ASSOCIATION
At Phoenix Children's Hospital the Barrow Neurological Institute pediatric teams began aggressive treatment immediately. She started a 3 day course of super strength steroids and after almost 5 days of complete paralysis; Amanda moved her left foot ever so slightly for the first time.
As days passed she began to move both legs.
Amanda then had a hemodialysis (HD) catheter placed in her chest for plasmapheresis treatments (PLEX).
Her blood plasma was completely exchanged every other day for the next 10 days and she started inpatient Physical and Occupational Therapy as well. During the PLEX treatment and PT/OT she began to experience more movement in her legs and started walking with a walker.
Next she received IVIG infusions for 3 nights in a row and movement improved.
The awesome physical therapy staff at Phoenix Children's Hospital even arranged a field trip to a nearby gym for some aquatic work!
Two days before Christmas she had a Rituxan Infusion treatment and then another on January 5th.
After 5 weeks, spending both Christmas and New Years in the hospital, Amanda finally came home to a warm welcome on January 6th. She is currently going to outpatient physical therapy 3 times a week and is responding well to the treatment.
While still in a wheelchair, she is able to walk short distances with the aid of a walker. Amanda returned to Centennial High School on January 18th and has been to the mall a couple of times with friends since coming home. Getting back to some normal activities has been great for her spirit and mental attitude, which amazingly has been positive through this entire ordeal as seen by her smiling face in almost every picture and video.
Amanda’s full prognosis is unknown, but we are all hoping for a 100% recovery and it will take a very long time for her nerves and muscles to repair the damage caused by this disease. The outpouring of love, prayers and support from family and friends has been overwhelming and truly inspirational. My sister’s family is now entering a new phase of Amanda’s condition as medical claims are being processed. Significant deductibles, and out of pocket expenses for her care are mounting . Any help you can provide will be greatly appreciated! The meaning of the name Amanda is “Worthy of Love” and my niece is certainly that! Thanks for your donation and may God Bless You!
Organisator en begunstigde
Guy Patton
Organisator
Peoria, AZ
Gary Duchnowski
Begunstigde