Help Kaileigh START SMILING!
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This GoFundMe is made for my sister Kaileigh. Kaileigh is a full-time college student at Indiana University that will be entering her senior year. She is studying biology, hoping to pursue a career in genetics to help those with similar stories.
Kaileigh’s story started the day she was born, where she was diagnosed with a condition titled Ectodermal Dysplasia. Ectodermal dysplasias (ED) are a group of disorders in which two or more of the ectodermally derived structures — the skin, sweat glands, hair, nails, teeth and mucous membranes — develop abnormally (Kaileigh is affected by all of these.) Each person with an ectodermal dysplasia may have a different combination of defects. For example, in one person the hair and nails may be affected, while in another the sweat glands and teeth are affected. Each combination is considered a distinct type of ED. The condition is present from birth but may not be detected until later in childhood. This is considered a rare condition because less than 200,000 people have ED in the United States. Specifically, experts estimate about 3.5 of 10,000 people are affected by ED.
Like those with ED, Kaileigh was not born with enamel that protects her teeth from decaying. This decay can lead to other more serious health issues, in which Kaileigh has faced for her entire life. Her teeth constantly hurt, she has difficulty eating, and she receives constant judgement from her peers for the appearance of her teeth. Currently, insurance companies do not recognize those with ED’s condition as mandatory, but consider it cosmetic and won’t help cover any of the costs. Due to this, our family has faced a financial hardship that many other families face with children affected by ED.
Recently, Kaileigh found an Ortho Surgeon in Chicago, Illinois that was familiar with ED and very confident he could provide her with the smile she deserves. She needs this surgery sooner rather than later because the longer she waits the more jawbone she will lose, making this surgery impossible in the future. The cost for this surgery is astronomical as she was quoted $41,500 for the complete surgery. The surgery will involve extracting all of her teeth, placing titanium screws into her jawbone, and attaching a hybrid bridge that contains the teeth. During the process, the surgeon will position the teeth in a way to correct her under bite as well. The surgery can be performed in 48 hours, after all expenses are paid, and the recovery can last weeks to months after the procedure. To ease the full financial responsibility on Kaileigh, my family would sincerely appreciate your donation to help give Kaileigh the smile she deserves.
Kaileigh was diagnosed with ED at birth, and has grown up with this condition her whole life. However, anyone that knows Kaileigh knows she does not let this condition define her. She is a beautiful, intelligent, and very outgoing person that chooses to make the best out of the cards she was dealt. Kaileigh was a Riley Child at Riley Hospital for Children, and is an advocate for Riley Hospital by participating in Dance Marathon for 7 years and raised more than $2,500 last year alone. She also raises awareness for ED by advocating to pass the Ensuring Lasting Smiles Act (ELSA) by sharing her story with others. Kaileigh loves helping others, but this one time we would love to help her.
Some of our family was fortunate enough to travel to Washington, DC two years ago where Kaileigh finally had the opportunity to meet others with ED. The National Foundation for Ectodermal Dysplasia is an organization dedicated to spreading awareness about ED and continuously fights for insurance companies to cover medically necessary services resulting from congenital abnormalities.
Here is a link to read more about ED: https://www.nfed.org
Here is a link to the company that will be performing the surgery & a description of the process: https://getdoneinone.com
We cannot thank you all enough for your love & support, and would never be able to repay you for the difference you are making in Kaileigh’s life.
Kaileigh’s story started the day she was born, where she was diagnosed with a condition titled Ectodermal Dysplasia. Ectodermal dysplasias (ED) are a group of disorders in which two or more of the ectodermally derived structures — the skin, sweat glands, hair, nails, teeth and mucous membranes — develop abnormally (Kaileigh is affected by all of these.) Each person with an ectodermal dysplasia may have a different combination of defects. For example, in one person the hair and nails may be affected, while in another the sweat glands and teeth are affected. Each combination is considered a distinct type of ED. The condition is present from birth but may not be detected until later in childhood. This is considered a rare condition because less than 200,000 people have ED in the United States. Specifically, experts estimate about 3.5 of 10,000 people are affected by ED.
Like those with ED, Kaileigh was not born with enamel that protects her teeth from decaying. This decay can lead to other more serious health issues, in which Kaileigh has faced for her entire life. Her teeth constantly hurt, she has difficulty eating, and she receives constant judgement from her peers for the appearance of her teeth. Currently, insurance companies do not recognize those with ED’s condition as mandatory, but consider it cosmetic and won’t help cover any of the costs. Due to this, our family has faced a financial hardship that many other families face with children affected by ED.
Recently, Kaileigh found an Ortho Surgeon in Chicago, Illinois that was familiar with ED and very confident he could provide her with the smile she deserves. She needs this surgery sooner rather than later because the longer she waits the more jawbone she will lose, making this surgery impossible in the future. The cost for this surgery is astronomical as she was quoted $41,500 for the complete surgery. The surgery will involve extracting all of her teeth, placing titanium screws into her jawbone, and attaching a hybrid bridge that contains the teeth. During the process, the surgeon will position the teeth in a way to correct her under bite as well. The surgery can be performed in 48 hours, after all expenses are paid, and the recovery can last weeks to months after the procedure. To ease the full financial responsibility on Kaileigh, my family would sincerely appreciate your donation to help give Kaileigh the smile she deserves.
Kaileigh was diagnosed with ED at birth, and has grown up with this condition her whole life. However, anyone that knows Kaileigh knows she does not let this condition define her. She is a beautiful, intelligent, and very outgoing person that chooses to make the best out of the cards she was dealt. Kaileigh was a Riley Child at Riley Hospital for Children, and is an advocate for Riley Hospital by participating in Dance Marathon for 7 years and raised more than $2,500 last year alone. She also raises awareness for ED by advocating to pass the Ensuring Lasting Smiles Act (ELSA) by sharing her story with others. Kaileigh loves helping others, but this one time we would love to help her.
Some of our family was fortunate enough to travel to Washington, DC two years ago where Kaileigh finally had the opportunity to meet others with ED. The National Foundation for Ectodermal Dysplasia is an organization dedicated to spreading awareness about ED and continuously fights for insurance companies to cover medically necessary services resulting from congenital abnormalities.
Here is a link to read more about ED: https://www.nfed.org
Here is a link to the company that will be performing the surgery & a description of the process: https://getdoneinone.com
We cannot thank you all enough for your love & support, and would never be able to repay you for the difference you are making in Kaileigh’s life.
Organizer and beneficiary
Dakota William Terry Thomas
Organizer
Indianapolis, IN
Kaileigh Thomas
Beneficiary
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