Help fulfill Audrey's final wishes.
Donation protected
Ladies and gentlemen, I'd like you to meet Audrey Rose Mischler. Born June 7th of 2010, Audrey is a 10-year-old angel. Up until recently, Audrey was a socialite and a chatterbox who loved to sing and dance and touched the hearts of everyone she encountered, but she's been robbed of all of those things. For the past 3 years Audrey has had to endure learning issues, speech problems, and more recently violent cataplectic episodes similar to seizures but different because the effected person remains conscious during a cataplectic attack.
These things have made the things you and I take for granted a danger to her like walking, swallowing, or eating with a fork. No child should ever have to live through this type of horror, so for the last 3 years my brother and his wife have sought answers to their daughter's problems and those answers finally came on Thursday March 4th of 2021 when Audrey was diagnosed with Niemann-Pick Disease Type C.
Niemann-Pick Disease Type C or NPC as it's referred to is a rare progressive genetic disorder characterized by an inability of the body to transport cholesterol and other fatty substances (lipids) inside of cells. This leads to the abnormal accumulation of these substances within various tissues of the body, including brain tissue. The accumulation of these substances damages the affected areas. In time this will lead to near complete loss of motor function and the inability to swallow which means Audrey will have to be fed through a tube. As the disease progresses Audrey will begin to descend into dementia, forgetting people she's known all of her life, all while the cataplectic episodes continue to get progressively worse.
In short, Niemann-Pick Disease Type C or NPC is fatal. There is no cure, only a medication to help deal with the symptoms called Migalastat, but Migalastat's cost is around $13,000.00 per month. The only solace we can take in all of this is that due to Niemann-Pick, Audrey still has the mind of a kindergartner. She does not understand what is going on, she'll pass into the next world innocent, and will never know the life she's been robbed of.
Audrey has always been selfless, caring, and loving to anyone she's come in contact with and it's my hope that this post will reach far and wide to people around the world that share those traits. This post isn't about saving Audrey's life because we can't do that, her sentence has been passed. What we can do is make sure that the last few years she has left to enjoy life are spent doing exactly that. Audrey's future is filled with trips from Southwestern Indiana to Minnesota to the Mayo Clinic as well as trips to the Rush University Medical Center in Chicago, but between those trips we as a group can fulfill some of her dreams.
Audrey is a sucker for a Disney Princess, what 10-year-old girl isn't? Audrey's biggest dreams are to meet Sofia The First and the Transformers at Disney in Orlando, to see Princess Elsa in Frozen the Musical in New York, or to visit the Jurassic World Live Tour which sadly has been closed due to COVID.
No parent should ever have to be told that they will outlive their child, it disturbs the natural order of things and is a nightmare that no parent should ever have to live through. For those parents that have to live this nightmare, the best thing any of us could hope to do is to make the best of what time you have left and fill it with memories of your child's laughter and smile. I'm asking those of you who read this post to help me in making Audrey's final wishes a reality. If you can't donate due to current financial hardships caused by COVID, then I ask that you please share this post on all of your social media outlets and keep Audrey and her family in your prayers. Pray for her that when the final stages of this disease take hold that her walk to the other side is quick, painless, and guided by those members of her family who have gone before her. Pray for her 4 brothers and sisters, that God may wrap them in his grace and ease the pain in their hearts. Pray for her parents that God may lend them your strength to guide Audrey on her journey beyond the veil to a place where she can dance and sing once more.
God, grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference. - Saint Francis of Assisi
These things have made the things you and I take for granted a danger to her like walking, swallowing, or eating with a fork. No child should ever have to live through this type of horror, so for the last 3 years my brother and his wife have sought answers to their daughter's problems and those answers finally came on Thursday March 4th of 2021 when Audrey was diagnosed with Niemann-Pick Disease Type C.
Niemann-Pick Disease Type C or NPC as it's referred to is a rare progressive genetic disorder characterized by an inability of the body to transport cholesterol and other fatty substances (lipids) inside of cells. This leads to the abnormal accumulation of these substances within various tissues of the body, including brain tissue. The accumulation of these substances damages the affected areas. In time this will lead to near complete loss of motor function and the inability to swallow which means Audrey will have to be fed through a tube. As the disease progresses Audrey will begin to descend into dementia, forgetting people she's known all of her life, all while the cataplectic episodes continue to get progressively worse.
In short, Niemann-Pick Disease Type C or NPC is fatal. There is no cure, only a medication to help deal with the symptoms called Migalastat, but Migalastat's cost is around $13,000.00 per month. The only solace we can take in all of this is that due to Niemann-Pick, Audrey still has the mind of a kindergartner. She does not understand what is going on, she'll pass into the next world innocent, and will never know the life she's been robbed of.
Audrey has always been selfless, caring, and loving to anyone she's come in contact with and it's my hope that this post will reach far and wide to people around the world that share those traits. This post isn't about saving Audrey's life because we can't do that, her sentence has been passed. What we can do is make sure that the last few years she has left to enjoy life are spent doing exactly that. Audrey's future is filled with trips from Southwestern Indiana to Minnesota to the Mayo Clinic as well as trips to the Rush University Medical Center in Chicago, but between those trips we as a group can fulfill some of her dreams.
Audrey is a sucker for a Disney Princess, what 10-year-old girl isn't? Audrey's biggest dreams are to meet Sofia The First and the Transformers at Disney in Orlando, to see Princess Elsa in Frozen the Musical in New York, or to visit the Jurassic World Live Tour which sadly has been closed due to COVID.
No parent should ever have to be told that they will outlive their child, it disturbs the natural order of things and is a nightmare that no parent should ever have to live through. For those parents that have to live this nightmare, the best thing any of us could hope to do is to make the best of what time you have left and fill it with memories of your child's laughter and smile. I'm asking those of you who read this post to help me in making Audrey's final wishes a reality. If you can't donate due to current financial hardships caused by COVID, then I ask that you please share this post on all of your social media outlets and keep Audrey and her family in your prayers. Pray for her that when the final stages of this disease take hold that her walk to the other side is quick, painless, and guided by those members of her family who have gone before her. Pray for her 4 brothers and sisters, that God may wrap them in his grace and ease the pain in their hearts. Pray for her parents that God may lend them your strength to guide Audrey on her journey beyond the veil to a place where she can dance and sing once more.
God, grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference. - Saint Francis of Assisi
Fundraising team (3)
Josh Mischler
Organizer
Vincennes, IN
Jesse Mischler
Beneficiary
Rebecca Mischler
Team member