Saving Claira
Donation protected
Claira Grace is a sweet, charismatic little girl who is so full of love and life. She is a blessing to everyone who meets her. She loves to play with her twin sister Chloe, being mommy's helper and going to school.
Since Claira was born, it became obvious that her body didn't react like most people's do. Kimberly, her mom, knew something was wrong. And so the journey began, countless hours spent visiting specialists and traveling to different hospitals trying to discover what was happening in her tiny little body. After years of wondering, they finally received a diagnosis, which was bittersweet for Kimberly. Claira has an ultra rare neurological disease called Alternating Hemiplegia of Childhood (AHC). AHC is very complex and the long term ramifications of this disease are heartbreaking and frightening to say the least. This disease is known to cause long term damage cognitively as well as physically and it involves so many systems of the body. It is said to be like having 7 different diseases at once:
1. Paralysis like stroke
2. Seizures and spells of reduced consciousness like epilepsy and a high risk of death from SUDEP or rapid severe permanent deterioration
3. Low muscle tone like cerebral palsy to include complications like the inability to breathe and swallow properly
4. Movement problems like Parkinson’s
5. Behavioral issues like ADHD
6. Learning challenges like Autism
7. Neuro degeneration like Alzheimer’s
There are multiple other systems effected, but those are the most universal.
These problems appear in transient episodes that have triggers. Every trigger can cause an essential bomb to explode, changing Claira's life forever and yet the triggers are nearly impossible to avoid. The triggers are sunlight, fluorescent lights, temperature changes, water (baths, showers, rain) exercise, illness, and stress to name a few. Once triggered, these episodes can last from minutes and hours to days and weeks and can be very severe.
In order for Claira to have the best odds at living a normal life, her neurologist wants her to go to a specialized AHC clinic at Duke University and start her on an expensive medication that isn't available in the United States. This medication, if it works, can minimize the episodes Claira has which could slow down the progression of long term damage. Kimberly is a single mom and the financial burdens of treatment have been a struggle for many years. In order to receive the care she needs at Duke University, they will need to travel to and from North Carolina often, meaning Kimberly will be out of work and without income during these times, making it very difficult to pay Claira's medical expenses. She will also have to pay out of pocket for the new medication as it is not covered by insurance. Claira will need specialized care, equipment and medications for the rest of her life. This family has a very long and hard road ahead of them. Kimberly is praying for a miracle and that is why I created this GoFundMe page for Claira's medical expenses. I cannot imagine being willing to do whatever it takes to save your baby but not having the financial means to do so.
As a single mom myself, I know first-hand, the challenges she is faced with everyday. She is the bread winner, the disciplinary and the confidant, the mom and the dad, the protector, the advocate, the cheerleader, the coach, the teacher, the cook, the maid, the cab driver...she is their EVERYTHING. Kimberly needs to focus on the huge job of single parent-hood, not how she will come up with enough money to save her daughter's life.
I know finances are tight for most of us, but I ask that you dig deep inside of yourself, put yourself in Kimberly's shoes, and give what you can. We were put on this earth to take care of each other and lift each other up during the darkest of times. This is an opportunity for you to be a blessing and help to save this precious little life. If you cannot give financially, I ask that you just pray for little Claira. She needs us to step up and facilitate miracles for her!
"I am so blessed to be Claira’s mother. She is teaching me more than I could ever teach her with her shining spirit and incredible heart. I would never wish this on any mother but I also know that I was chosen to be Claira’s mother for a reason. God has big plans for this little girl and we will continue to live each day full of love and hope."
-Kimberly
Since Claira was born, it became obvious that her body didn't react like most people's do. Kimberly, her mom, knew something was wrong. And so the journey began, countless hours spent visiting specialists and traveling to different hospitals trying to discover what was happening in her tiny little body. After years of wondering, they finally received a diagnosis, which was bittersweet for Kimberly. Claira has an ultra rare neurological disease called Alternating Hemiplegia of Childhood (AHC). AHC is very complex and the long term ramifications of this disease are heartbreaking and frightening to say the least. This disease is known to cause long term damage cognitively as well as physically and it involves so many systems of the body. It is said to be like having 7 different diseases at once:
1. Paralysis like stroke
2. Seizures and spells of reduced consciousness like epilepsy and a high risk of death from SUDEP or rapid severe permanent deterioration
3. Low muscle tone like cerebral palsy to include complications like the inability to breathe and swallow properly
4. Movement problems like Parkinson’s
5. Behavioral issues like ADHD
6. Learning challenges like Autism
7. Neuro degeneration like Alzheimer’s
There are multiple other systems effected, but those are the most universal.
These problems appear in transient episodes that have triggers. Every trigger can cause an essential bomb to explode, changing Claira's life forever and yet the triggers are nearly impossible to avoid. The triggers are sunlight, fluorescent lights, temperature changes, water (baths, showers, rain) exercise, illness, and stress to name a few. Once triggered, these episodes can last from minutes and hours to days and weeks and can be very severe.
In order for Claira to have the best odds at living a normal life, her neurologist wants her to go to a specialized AHC clinic at Duke University and start her on an expensive medication that isn't available in the United States. This medication, if it works, can minimize the episodes Claira has which could slow down the progression of long term damage. Kimberly is a single mom and the financial burdens of treatment have been a struggle for many years. In order to receive the care she needs at Duke University, they will need to travel to and from North Carolina often, meaning Kimberly will be out of work and without income during these times, making it very difficult to pay Claira's medical expenses. She will also have to pay out of pocket for the new medication as it is not covered by insurance. Claira will need specialized care, equipment and medications for the rest of her life. This family has a very long and hard road ahead of them. Kimberly is praying for a miracle and that is why I created this GoFundMe page for Claira's medical expenses. I cannot imagine being willing to do whatever it takes to save your baby but not having the financial means to do so.
As a single mom myself, I know first-hand, the challenges she is faced with everyday. She is the bread winner, the disciplinary and the confidant, the mom and the dad, the protector, the advocate, the cheerleader, the coach, the teacher, the cook, the maid, the cab driver...she is their EVERYTHING. Kimberly needs to focus on the huge job of single parent-hood, not how she will come up with enough money to save her daughter's life.
I know finances are tight for most of us, but I ask that you dig deep inside of yourself, put yourself in Kimberly's shoes, and give what you can. We were put on this earth to take care of each other and lift each other up during the darkest of times. This is an opportunity for you to be a blessing and help to save this precious little life. If you cannot give financially, I ask that you just pray for little Claira. She needs us to step up and facilitate miracles for her!
"I am so blessed to be Claira’s mother. She is teaching me more than I could ever teach her with her shining spirit and incredible heart. I would never wish this on any mother but I also know that I was chosen to be Claira’s mother for a reason. God has big plans for this little girl and we will continue to live each day full of love and hope."
-Kimberly
Organizer and beneficiary
Sara Wills
Organizer
Centennial, CO
Kimberly Vanderhoef
Beneficiary