Anya's fight against PKAN disease
Donation protected
My name is Olivia Esparza and I am the proud aunt of a beautiful and loving 7 year old girl, Anya.
Anya is suffering from Neuro Degenerative brain disease called Classic Pantothenate Kinase-Associated Nuero Degeneration or for short PKAN. The live expectancy of someone with this disease is 1-3 years.
Anya lives in Northwest, Indiana with her mom and 2 younger siblings. On December 14th, 2019 my family’s lives were turned upside down when we received this devastating diagnosis. Anya is one of the only confirmed cases of PKAN in Indiana.
Every sound every movement takes almost all her effort and concentration.
Anya cannot walk but she loves to watch her siblings and cousins run and play. Anya cannot talk but she loves to listen to music and hear her grandmother sing. Anya cannot feed herself it is difficult for her to chew and swallow but she loves fruit smoothies. Anya has poor eyesight but she loves to interact with people when they come to visit.
Anya's family needs to get her to Riley Hospital for Children in Indianapolis, Indiana; she needs a feeding tube.
Your donation will get her family to Indianapolis by securing a reliable wheelchair accessible van to make transporting Anya the 150+ miles to Indianapolis more comfortable and easier. Medicaid has covered most of the medical expenses and medication, however insurance will not cover some of the most critical aspects of Anya’s longer-term care, including many alternative and integrative therapies and experimental trials.
{UPDATE} Anya was rushed by ambulance to Rileys and received her feeding tube on January 15th 2021. She is required to travel back and forth to Riley's for follow up appointments and treatment.
Anya experiences dystonia, (sustained muscle contractions causing repetitive movements), dysarthria (abnormal speech), muscular rigidity, poor balance, and spasticity (sudden involuntary muscle spasms).
{UPDATE} Unfortunately her dystonia is no longer controlled with medication, Anya is in constant discomfort and spends most of the day upset and in pain.
She is currently on 4 different medications which are taken multiple times a day to manage her symptoms.
Anya continues to start each day with a smile, she is strong and fearless our warrior!
This will be a long battle that will affect my niece on so many levels. Please help me raise money for this unexpected journey forced upon them and remove some of the financial burden from their shoulders so they can focus on the health, happiness and well-being of Anya for however long she has left.
Anything you are willing to donate will be graciously accepted. We fully understand the current economic climate has affected many, so if you are not in a position to donate, all we ask is you repost or forward this on.
This ask, is not one I take lightly, this is extremely important and close to my heart so I respectfully request any and all assistance to help them with this battle.
Let's show them our love and support is unconditional. Thank you from the bottom of my heart.
You can follow her journey at https://www.facebook.com/AnyasPKANJourney
Olivia
Anya is suffering from Neuro Degenerative brain disease called Classic Pantothenate Kinase-Associated Nuero Degeneration or for short PKAN. The live expectancy of someone with this disease is 1-3 years.
Anya lives in Northwest, Indiana with her mom and 2 younger siblings. On December 14th, 2019 my family’s lives were turned upside down when we received this devastating diagnosis. Anya is one of the only confirmed cases of PKAN in Indiana.
Every sound every movement takes almost all her effort and concentration.
Anya cannot walk but she loves to watch her siblings and cousins run and play. Anya cannot talk but she loves to listen to music and hear her grandmother sing. Anya cannot feed herself it is difficult for her to chew and swallow but she loves fruit smoothies. Anya has poor eyesight but she loves to interact with people when they come to visit.
Anya's family needs to get her to Riley Hospital for Children in Indianapolis, Indiana; she needs a feeding tube.
Your donation will get her family to Indianapolis by securing a reliable wheelchair accessible van to make transporting Anya the 150+ miles to Indianapolis more comfortable and easier. Medicaid has covered most of the medical expenses and medication, however insurance will not cover some of the most critical aspects of Anya’s longer-term care, including many alternative and integrative therapies and experimental trials.
{UPDATE} Anya was rushed by ambulance to Rileys and received her feeding tube on January 15th 2021. She is required to travel back and forth to Riley's for follow up appointments and treatment.
Anya experiences dystonia, (sustained muscle contractions causing repetitive movements), dysarthria (abnormal speech), muscular rigidity, poor balance, and spasticity (sudden involuntary muscle spasms).
{UPDATE} Unfortunately her dystonia is no longer controlled with medication, Anya is in constant discomfort and spends most of the day upset and in pain.
She is currently on 4 different medications which are taken multiple times a day to manage her symptoms.
Anya continues to start each day with a smile, she is strong and fearless our warrior!
This will be a long battle that will affect my niece on so many levels. Please help me raise money for this unexpected journey forced upon them and remove some of the financial burden from their shoulders so they can focus on the health, happiness and well-being of Anya for however long she has left.
Anything you are willing to donate will be graciously accepted. We fully understand the current economic climate has affected many, so if you are not in a position to donate, all we ask is you repost or forward this on.
This ask, is not one I take lightly, this is extremely important and close to my heart so I respectfully request any and all assistance to help them with this battle.
Let's show them our love and support is unconditional. Thank you from the bottom of my heart.
You can follow her journey at https://www.facebook.com/AnyasPKANJourney
Olivia
Organizer
Olivia Esparza
Organizer
Chicago, IL