Clarabelle (age 9) is writing a children’s book series to educate people about her condition - HED (Hypohidrotic Ectodermal Dysplasia), empower herself, help raise money for the phenomenal cost of continual updates for dentures in a growing mouth, and to help other children who need teeth. Her children’s book series will have a 25 page maximum for each book, including the cover. Clarabelle wants her character to grow up with her in her children’s books, maturing as she does in real life. Eventually she hopes to write chapter books. She wants to keep her personal life private and chose the pen name Clarabelle Nightingale. Her first book is titled “Adventures With MaeMae: Nice to Meet You.” Her character lives in Mission Valley along the San Diego River on a farm. She has a professional artist illustrating her book series, Travis Monroe.
Travis Monroe is a Creative Director, Photographer, Artist, and Web Designer. He has released two sketches of the main character in her book series to share with the public. Travis was born and raised in Montana and is currently located in the Pacific Northwest. To learn more about Travis, please visit his website, http://www.travismonroe.com .
Clarabelle’s medical history is complex. She was born with a club foot (congenital talipes equinovarus) requiring two years of stretching and casting, an Achilles tenotomy, and braces. She was also born with her bowels sealed shut, requiring an emergency bowel resection. She suffered undetected Meconium Peritonitis in utero. Her intestines are overrun with bad bacteria and yeast. Her digestive system lacks the right bacteria for breaking down foods. She battles occasional vomiting. She suffers from chronic thrush, Candida albicans rashes, fermented stomach, and nausea. Due to her unhealthy bowels, she has a weakened immune system and gets sick easily. Changing the “make up” of her digestive system will take years of persistent treatment to kill the yeast and grow healthy bacteria. Her digestion specialist and treatment regimen are not covered by insurance (except for the standing order for Nystatin). Her clubfoot will not develop gastrocnemius muscles. She follows medical recommendations and takes lessons in activities difficult for her, like dance, that put all of her weight on her little leg. She was also born with a rare condition called Hypohidrotic Ectodermal Dysplasia (HED). She doesn’t sweat and overheats easily. The dangers of overheating are serious and can be read about at NFED.org. She needs a cooling vest to reduce core heat, a spray bottle to mimic sweat, and a wet hat to help keep her cool during the day. At night, she needs gel packs to help keep her from overheating while she sleeps. She doesn’t have tears - the surface of her eyes had visible damage from lack of moisture by the age of 4. She lacks saliva for breaking down foods and swallowing - she needs to wash food down with fluids. Like many others with HED, she has small ear canals and eustachian tubes. She has suffered from fluid behind the ear drums and has tubes in her ears. She suffers from chronic ear pain and often struggles to hear. She lacks body hair and eyebrows, but unlike others with HED, she was blessed with hair on her head. She doesn’t have very many teeth. The few teeth she has are misshapen, common with HED. Eating is incredibly slow. Two molars on the right side connect and two molars on the left partially connect for chewing. No teeth in the front connect for biting and tearing foods.
Despite all her challenges, Clarabelle is a fighter and determined not to let her disabilities hold her back. She finds joy in every day. She loves to dance, sing, act, play tennis, and swim like a mermaid. She enjoys spending time with elderly at a local retirement home and lifting their spirits on Wednesdays. She gives thanks for what she’s been given and has compassion for others struggling with greater disabilities and health challenges.
The one thing that breaks Clarabelle’s spirit is her mouth. The past and present bullying combined with lack of understanding about her eating challenges - and the enormous amount of time required to chew foods and swallow has made her mouth psychologically more painful than the rest of her struggles combined. The first two years of school, Clarabelle spent everyday hungry in class, trying to get enough food eaten to be excused and get a few minutes of recess, wishing for more teeth to help her eat, eating as much as she could in the evenings, and struggling with weight gain. Both years, the school photographers told her to close her mouth for picture day after she had happily smiled, crushing her. Her book series is helping her to feel confident again when she smiles. She wants her books to help others feel more confident, too.
One of the books Clarabelle wants to write is about bullying. She’s working on how to tell this part of her story in a way that will help stop bullying, educate the reader, and empower others with disabilities. Children want to touch her jagged teeth. She gets called a vampire by both children and grownups on playgrounds and in stores. Children call her a dog, ask her if she’s still in her Halloween costume, and tell her she looks stupid. Middle school kids laugh at her and call her Chuck (woodchuck). Adults laugh and comment on her missing teeth. There’s both a physiological and psychological need for teeth.
Dentures and adjustments are not covered for children born with disabilities impacting their mouths. Teeth are a necessity for children expected to be able to keep up in school settings. Clarabelle hopes to return to public schools someday (as a famous author), with the ability to keep up on eating, get all her recess time, and smile for picture day without being shunned. The good news for now, since Clarabelle has been able to get her education and eat at the same time all day long, she has grown 2-1/4” and gained over 6lbs in the past 4 months and 3 days…and she’s writing a book series.
Clarabelle will be ready for her first set of top dentures in 2020. Her family believes they must find their own long term solution for care. This is why the greatest gift anyone can give is to press “share.” Clarabelle’s book series will give her a solid foundation for her future.
“Adventures With MaeMae: Nice to Meet You” should be ready to go to print by the end of the first quarter of 2020.
Here are donation guidelines for receiving books in return:
“Adventures with MaeMae: Nice to Meet You” - digital copy - $25
“Adventures with MaeMae: Nice to Meet You” - hard copy - $58.50
“Adventures with MaeMae: Nice to Meet You” - digital and hard copy - $75
Inquiries and people who would like a hard copy of Clarabelle’s book - please send emails to [email redacted]
Ellen DeGeneres- have someone search “Author, Age 9 wants to meet you” in your email. You have personal email and contact information from the family.
Publishers - please email the phone number and extension of a decision maker, as well as location address to [email redacted]
Thanks to everyone who supports this type of a GoFundMe focused on a longterm financial solution. Please click “share” to help spread the message and reach their goal.
THANK YOU ALL. PLEASE SHARE HER STORY.
The family also has ideas on how to help raise money, if you’re interested.
FAMILY IDEAS - If you can forward to Manufacturers and Patent Lawyers willing to help Clarabelle by giving her mother a hand up, as well - it will help reduce the financial burden on the family.
Clarabelle’s mother has two ideas she’s worked on developing which need to be patented and manufactured - a communication device, The Liaison, for people who have speech/hearing challenges and a new device, DogNo!, to keep dogs out of garbages, litter boxes, rooms, and other areas inside the home. Both of these ideas had been put on hold until Clarabelle was older, but it’s become clear that Clarabelle’s needs won’t be met without an impressive increase in income. This is why the GoFundMe is combining a child’s medical needs with her own hope to become philanthropist - and her mother’s vision of making the world a better place for millions through the ability to communicate…and help dogs behave.
Clarabelle’s mother has been working with Speech Therapists in an Aphasia program for 2-1/2 years. She has a real-life look at the struggles both families and clients endure while trying to communicate with loved ones who have suffered from speech and hearing loss. The Liaison will give those who struggle with speech or have no ability to speak, but can identity their needs, a voice others can hear. The Liaison will also bring speech to those who struggle to hear or process speech - giving them time to understand what they’ve heard. Clarabelle’s mother also sees a need for another tool inside the home for dogs who sneak into areas where they shouldn’t be when nobody is looking.
The Liaison will bring speech to the autistic, deaf, hard of hearing, people who have suffered strokes, process speech too slow to understand, have suffered traumatic brain injuries, those who struggle to find words, and many more groups of people. Speech Therapists within the Aphasia program believe this device will have the ability to send some groups of people back to work immediately, give others independence, give many who can’t speak their first ‘voice’ ever, restore a feeling of self worth amongst a struggling group of people, bring relief to families trying to communicate with effected loved ones, and much more. The liaison will create a sustainable income when developed and will be the income base for the family as they move through the medical expenses and challenges of the next decade and beyond. The need for such a great communication device for less fortunate communicators is great and there will be phases in the release and development, creating a greater demand over time. Current planned phases include; The Liaison, The Liaison: Communicator, The Liaison: Interpreter, The Liaison: Traveler, and The Liaison: Entertainer. DogNo! should be a popular item. The Liaison will take the longest to develop, but will create substantial income and cover all expenses when it’s through production.
Manufacturers and Patent Lawyers please email the phone number and extension of a decision maker, as well as location address to [email redacted] .
Please send emails to [email redacted] to contact Clarabelle’s mother regarding DogNo! and The Liaison. Thank you for your support.
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