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February 14th was a day of love and warm, fuzzy feeling... for some. I am making this post as a shout for everyone to hear, with hopes that it doesn't go ignored.
Initially, a fundraiser was created with a happy tone, carrying upon its wings the optimism of a young woman and her hopes of living a healthier life & for the well-being of her family. It is with a heavy heart that I must announce that things have taken a turn. Things were looking up for Shannon, but recent events pulled the hand of fate against her. Nobody wants to hear the truth. Yet although no one wants to face the realities of the situation, we all know the facts--I must announce the ending of Shannon's battle with neurofibromatosis Type 2, the same genetic disorder that I have. Shannon went home on the 14th, surrounded by her wonderful family and some close friends. Shannon now has a new body without any tumors, pain, or discouragement.
Born in a chilly autumn circa 1987, she had yet to experience the full force of NF2. Her first encounter with the disorder struck at the mere age of five, when she had first operation. Yes, at the age when most children are catching butterflies and riding tricycles, she was having surgery. In the span of twenty-seven years, Shannon has had over twenty operations--four alone in/on her brain. It averages to an operation every nine-ten months. Some people undergo fewer than three within their first thirty years on earth. She has had nearly two dozen, and these procedures are nothing light or simplistic. Neurosurgery takes time (sometimes over twenty hours, requiring weeks of hospitalization), precision, and a massive toll on the host. In the case of Shannon, her body had been ravished beyond hope. In early February of this year (2014), there was an attempt at removing a tumor, created by NF2, from her brain. It was successful only in small pieces of its removal; the rest was kept, for fear of arteries it was encased in rupturing, cause Shannon’s death. NF2 tumors are delicate in their removal, and nerve damage is nearly always the case when they are removed. She had paralyzed vocal cords, destroying her ability to speak any higher than a whisper. Worse are her cranial tumors: An MRI had determined that tumors in her brain had grown significantly. Shannon was without hearing and had 80-90% blockage in her c2 vertebrate, which caused major weakness in her body. More testing had revealed other growing tumors, major weakness, headaches, a recent inability to keep down food, and other significant symptoms. She fought valiantly, but NF2 won n the end..
Shannon had had some experience in this world with the “normal” lifestyle. NF2 notwithstanding, she pursued happiness, as all people strive. On October 6, 2012 she married Charles Wachal, and the two became parents to a little girl named Abigail Grace. The two moved to Texas, intending on settling down in the Lone Star state. Her medical situation quickly worsened, and the two relocated back home to Rochester, New York. Their one-year anniversary was spent in the dismal confines of a hospital, Charles praying at her side as she slept in ICU. We can only wonder what was going through his mind that night. Truth be told, it’s unlikely that anyone would dare to. Where adversity limited her, Shannon retained her perseverance. Her strength in desire--to become healthier and to help others in need--was unfaltering. It is something NF2 could never take from her.
This fundraiser was initially set up solely in hopes of funds to offset the cost of traveling to/from hospitals, surgeries, recovery, and follow-ups--not to mention living expenses, and for Abigail’s care. Yet she had fallen, earning her Angel Wings. The devastation resulting from it isn’t limited to sadness and faltered spirits. A few items we need to take into consideration:
Although funeral prices vary considerably between funeral homes and geographic areas of the country, here is a reasonable “ballpark” estimate of the main costs that are involved (stats provided by http://funeral-tips.com/funeral-costs-how-much-does-an-average-funeral-cost/ :
fee for the funeral director’s services: $1,500
cost for a casket: $2,300
embalming: $500
cost for using the funeral home for the actual funeral service: $500
cost of a grave site: $1,000
cost to dig the grave: $600
cost of a grave liner or outer burial container: $1,000
cost of a headstone: $1,500
Childcare is also an issue. For the sake of edification: It is a well-documented fact among neurologists that the hormones found in birth control worsen the symptoms of NF2 in females. It could be argued a woman with NF2 shouldn’t procreate, yet the options for prevention is vastly limited in a female patient with the disorder, thus nature ran its course with the birth of Abigail. Charles and the family are left to pay the associated fees that will incur from raising Abigail alone. Assuming he wouldn’t work, opting to be a stay-at-home father, fees will mount. Conversely, should he work, a daycare would be needed. The little girl is but a baby. From: www.babycenter.com/0_how-much-youll-spend-on-childcare_1199776.bc
Going the babysitter route would still carry a hefty price-tag. Someone would need to watch over Abigail for an extended frame of time until she will be lawfully capable of watching over herself--this would easily be a decade at the least. As far as anyone is aware, the NF2 gene hadn’t passed to Abigail.
My name, of course, is Randy L. Pendleton, a writer from Ohio. Like Shannon, I too have NF2. This fundraiser was set up by Anne Noble, a fellow NF2’er and NF Endurance team member who has raised around $25,000 through it since 2007. Anne was diagnosed when she was seven; I wasn’t until the age of sixteen. Anne met Shannon via a Deaf and Hard of Hearing group on Facebook. The two became immediate friends. It was Shannon who encouraged Anne to visit the Rochester Institute of Technology (RIT) in spring 2007, and the two physically met a few months later. They’ve remained close through the years. Anne and I aren’t telemarketers: Faceless people pitching products we know nothing about to the masses. We three possess this same damning genetic disorder, all in varying degrees of severity. In the case of Anne, the two women were close, dear friends. She and I--as well as her family and friends-- ask for your prayers, but praying alone isn’t enough.
I’ve undergone my shares of perils throughout my thirty-plus years on earth. The same could be said for Anne. We both could write tomes on Shannon. Yet I believe it is her sister who says the words the best. From Rachel:
The family of Shannon Wachal would greatly appreciate if you could offer to this fund. She left behind a beautiful daughter, a loving husband, a caring sister, and the legacy of a brave soul who weathered the storm of neurofibromatosis until the very, bitter end. All donations, regardless of its size, are welcome and appreciated. Whether it is one dollar or a thousand, we would be thankful to have your help in securing the future of the Wachal family. We were hoping against hope, true. But if we couldn't cure her, the second best thing would be to ensure the safety of her little girl and husband.
To close, with a few words from her sister:
--Randy L. Pendleton
http://www.youcaring.com/medical-fu...the-healthy-mommy-she-dreams-of-being-/115104
To read Rachel's full blog, go here: http://www.shmesolution.com/2013/10/20/for-shannon/
Initially, a fundraiser was created with a happy tone, carrying upon its wings the optimism of a young woman and her hopes of living a healthier life & for the well-being of her family. It is with a heavy heart that I must announce that things have taken a turn. Things were looking up for Shannon, but recent events pulled the hand of fate against her. Nobody wants to hear the truth. Yet although no one wants to face the realities of the situation, we all know the facts--I must announce the ending of Shannon's battle with neurofibromatosis Type 2, the same genetic disorder that I have. Shannon went home on the 14th, surrounded by her wonderful family and some close friends. Shannon now has a new body without any tumors, pain, or discouragement.
Born in a chilly autumn circa 1987, she had yet to experience the full force of NF2. Her first encounter with the disorder struck at the mere age of five, when she had first operation. Yes, at the age when most children are catching butterflies and riding tricycles, she was having surgery. In the span of twenty-seven years, Shannon has had over twenty operations--four alone in/on her brain. It averages to an operation every nine-ten months. Some people undergo fewer than three within their first thirty years on earth. She has had nearly two dozen, and these procedures are nothing light or simplistic. Neurosurgery takes time (sometimes over twenty hours, requiring weeks of hospitalization), precision, and a massive toll on the host. In the case of Shannon, her body had been ravished beyond hope. In early February of this year (2014), there was an attempt at removing a tumor, created by NF2, from her brain. It was successful only in small pieces of its removal; the rest was kept, for fear of arteries it was encased in rupturing, cause Shannon’s death. NF2 tumors are delicate in their removal, and nerve damage is nearly always the case when they are removed. She had paralyzed vocal cords, destroying her ability to speak any higher than a whisper. Worse are her cranial tumors: An MRI had determined that tumors in her brain had grown significantly. Shannon was without hearing and had 80-90% blockage in her c2 vertebrate, which caused major weakness in her body. More testing had revealed other growing tumors, major weakness, headaches, a recent inability to keep down food, and other significant symptoms. She fought valiantly, but NF2 won n the end..
Shannon had had some experience in this world with the “normal” lifestyle. NF2 notwithstanding, she pursued happiness, as all people strive. On October 6, 2012 she married Charles Wachal, and the two became parents to a little girl named Abigail Grace. The two moved to Texas, intending on settling down in the Lone Star state. Her medical situation quickly worsened, and the two relocated back home to Rochester, New York. Their one-year anniversary was spent in the dismal confines of a hospital, Charles praying at her side as she slept in ICU. We can only wonder what was going through his mind that night. Truth be told, it’s unlikely that anyone would dare to. Where adversity limited her, Shannon retained her perseverance. Her strength in desire--to become healthier and to help others in need--was unfaltering. It is something NF2 could never take from her.
This fundraiser was initially set up solely in hopes of funds to offset the cost of traveling to/from hospitals, surgeries, recovery, and follow-ups--not to mention living expenses, and for Abigail’s care. Yet she had fallen, earning her Angel Wings. The devastation resulting from it isn’t limited to sadness and faltered spirits. A few items we need to take into consideration:
Although funeral prices vary considerably between funeral homes and geographic areas of the country, here is a reasonable “ballpark” estimate of the main costs that are involved (stats provided by http://funeral-tips.com/funeral-costs-how-much-does-an-average-funeral-cost/ :
fee for the funeral director’s services: $1,500
cost for a casket: $2,300
embalming: $500
cost for using the funeral home for the actual funeral service: $500
cost of a grave site: $1,000
cost to dig the grave: $600
cost of a grave liner or outer burial container: $1,000
cost of a headstone: $1,500
Childcare is also an issue. For the sake of edification: It is a well-documented fact among neurologists that the hormones found in birth control worsen the symptoms of NF2 in females. It could be argued a woman with NF2 shouldn’t procreate, yet the options for prevention is vastly limited in a female patient with the disorder, thus nature ran its course with the birth of Abigail. Charles and the family are left to pay the associated fees that will incur from raising Abigail alone. Assuming he wouldn’t work, opting to be a stay-at-home father, fees will mount. Conversely, should he work, a daycare would be needed. The little girl is but a baby. From: www.babycenter.com/0_how-much-youll-spend-on-childcare_1199776.bc
While your child is in the baby and toddler stages, you'll pay more. That's because kids this age need more hands-on care and so the center must hire more caregivers. The average cost of center-based daycare in the United States is $11,666 per year ($972 a month), but prices range from $3,582 to $18,773 a year ($300 to $1,564 monthly), according to the National Association of Child Care Resource & Referral Agencies (NACCRRA). Parents report higher costs – up to $2,000 a month for infant care – in cities like Boston and San Francisco.
Going the babysitter route would still carry a hefty price-tag. Someone would need to watch over Abigail for an extended frame of time until she will be lawfully capable of watching over herself--this would easily be a decade at the least. As far as anyone is aware, the NF2 gene hadn’t passed to Abigail.
My name, of course, is Randy L. Pendleton, a writer from Ohio. Like Shannon, I too have NF2. This fundraiser was set up by Anne Noble, a fellow NF2’er and NF Endurance team member who has raised around $25,000 through it since 2007. Anne was diagnosed when she was seven; I wasn’t until the age of sixteen. Anne met Shannon via a Deaf and Hard of Hearing group on Facebook. The two became immediate friends. It was Shannon who encouraged Anne to visit the Rochester Institute of Technology (RIT) in spring 2007, and the two physically met a few months later. They’ve remained close through the years. Anne and I aren’t telemarketers: Faceless people pitching products we know nothing about to the masses. We three possess this same damning genetic disorder, all in varying degrees of severity. In the case of Anne, the two women were close, dear friends. She and I--as well as her family and friends-- ask for your prayers, but praying alone isn’t enough.
I’ve undergone my shares of perils throughout my thirty-plus years on earth. The same could be said for Anne. We both could write tomes on Shannon. Yet I believe it is her sister who says the words the best. From Rachel:
I keep pausing, thinking about just deleting this entire terrible entry. Because I can’t make it “sound right.” I can’t use pretty words and storytelling to make this situation seem better than it is... And I couldn’t stop repeating “I don’t understand. I just don’t understand”, because no other words would come to me... Deep down I just didn’t want her to be sick. I wanted to think that one day she would get better. That there would be a cure, or a change, and she would go back to being healthy... And now I just sob myself to sleep because I can’t go back... And I think of the adult sister now who, despite everything – despite NF2, despite the surgeries and the struggles and the loss of hearing – is really happy... She is the epitome of grace and courage when it comes to being sick. She doesn’t spend time worrying, or feeling sorry for herself. She accepts her life more easily than even some of the healthiest people – she knows that NF eventually will take her life, but she doesn’t waste the time she has left feeling sorry for herself. She’s appreciating every moment she has with her little baby girl, Abigail.
I couldn’t think of a Shannon without NF2, because that’s just part of her. It’s a sometimes-terrible and sometimes-sad part of her, but it’s a part of her. It has made her who she is. It brought her to her husband Charles. It made her grow up too soon. It shaped and formed the way she sees the world. And it gave her these amazing qualities that I can’t even imagine having at 26: acknowledgment of the finite nature of life, acceptance of our human bodies, and the belief that even when diseases might destroy our bodies, they cannot ever touch our souls.
And Shannon has a really beautiful soul... Despite the fact that sometimes I just can’t stop crying because my sweet, beautiful, older sister isn’t going to be around forever – I feel truly and deeply privileged to be her sister. To have had her in my life for any time at all. To be witness to both the incredibly beautiful and the incredibly heartbreaking parts of life. And to love her. Love that sometimes doesn’t understand why she’s sick, and sometimes sobs at the injustice of it all… but love, nonetheless.”
The family of Shannon Wachal would greatly appreciate if you could offer to this fund. She left behind a beautiful daughter, a loving husband, a caring sister, and the legacy of a brave soul who weathered the storm of neurofibromatosis until the very, bitter end. All donations, regardless of its size, are welcome and appreciated. Whether it is one dollar or a thousand, we would be thankful to have your help in securing the future of the Wachal family. We were hoping against hope, true. But if we couldn't cure her, the second best thing would be to ensure the safety of her little girl and husband.
To close, with a few words from her sister:
I love you Shanny. I always have. I always will. Thank you for showing me how to embrace life, no matter what. And thank you for being my sissy.
--Randy L. Pendleton
http://www.youcaring.com/medical-fu...the-healthy-mommy-she-dreams-of-being-/115104
To read Rachel's full blog, go here: http://www.shmesolution.com/2013/10/20/for-shannon/
