My name is Haylee and I am organizing this fundraiser for my niece Zoe. She is a funny, creative, loving, and somewhat shy college student. Since she was small, she has wowed us with her unique since of humor and artistic gifts and interests—drawing, painting, making videos, finding new music we all enjoy. She doesn’t ask for much and has cultivated contentment and gratitude in her life. One of her most common requests from me since she was a kid was just to drive around and listen to songs she wanted me to hear, or to share a show she loves with me so we can gab about it together. She’s a devoted daughter, sister, niece, and friend and right now she and her family need our help.

Zoe’s mom is my big sister Elise—one of my best and most faithful friends, a second mother to my younger sister Emily and I, and a person whose love of her family and friends has always been sacrificially generous. In the last year they’ve had a lot of challenges already. Elise was laid off from her job after 15 years of excellent performance when the company came under new ownership. Having been in the workforce since she was 14 years old and putting herself last for much of that time, she had only recently begun working toward her bachelor’s degree. After she lost her job, she used the time to complete the degree at an accelerated pace and without taking out any student loans. Her previous experience was extensive, but in a somewhat niche field while the job market is—well, what it is right now. Her new job came at a significant pay cut, but as is typical for Elise she dove in fully, working extra hours and weekends and cutting back wherever possible. She has always been responsible with what she has, but what they’re facing now is set up to deal a major blow to her careful savings.

Zoe was born with a very rare genetic condition. Ectodermal Dysplasia is a group of genetic conditions that only impacts about 0.0145% of the population and can change how a person’s hair, teeth, nails, and certain glands develop and work. There are multiple variants, some more studied than others. Zoe’s variant impacts her hair and nail growth to a degree, but it has most significantly impacted her dental health, with many of her adult teeth never having formed at all. Since she was 8 years old she has completed multiple orthodontic treatment plans totaling around $10,000 in out-of-pocket costs. 

The newest treatment plan comes with a $68,000 price tag that will primarily be covered out of pocket by Elise and Zoe’s dad Michael, due to prosthodontic work often being excluded by insurance companies because of the costs associated with them. They classify the procedures as elective, cosmetic, or major restorative procedures rather than preventative necessities. However, that classification can be inaccurate, and in Zoe’s case it certainly is. Malocclusion, or a “bad bite” and missing teeth can cause lifelong functional and structural challenges including chronic chewing and speech difficulties, progressive bone loss in the jaw, and a collapsed lower facial profile. So in order to prevent long term problems, provide a framework to address future tooth loss, and drastically improve her overall health outcomes, she needs to move forward with this treatment plan. It involves restoration, bone grafting, tooth and jaw implants. They have applied for assistance through the National Foundation of Ectodermal Dysplasias, but even if they receive funds it will not be more than $3,000.

Elise and Michael have successfully co-parented Zoe and are committed to making sure she receives the treatment regardless, but the burden of cost will have a negative impact for years to come—unless some of us are willing to lend a hand.

My family has faced many financial, emotional, and grief-filled hardships over the years, but we have never asked for this kind of help. We have never had a lot, but we have shared what we’ve had with each other and with our communities. Elise has done so much for our family, for her friends, and for me personally. She bought me my first guitar. She made sure I got to wear clothes I liked and do fun things when we really didn’t have the money to make it happen without a little extra elbow grease. She came over almost daily to help me survive when I was finishing my bachelor’s degree with a colicky newborn and untreated/undiagnosed mental illness. She has shown up in so many ways. I wouldn’t be who or where I am without her. I’m praying that now people will show up for her and for my much-beloved niece.

I don’t know what to expect or if it’s possible, but my goal would be to raise enough money to cover the full cost of the treatment plan—which doesn’t even include their out-of-state travel costs for the treatment. It strictly covers the prosthodontics. I know most everyone is facing financial challenges right now. But I also know a promise from God our Daddy often repeated to us: “In blessing, I will bless you.” We’ve seen it in our lives countless times, and I believe we will see it again and pass on the joy of that experience to others. We have to take care of each other where we can, and that is a kind of love that echoes.

I ask that you give, share the link, and mention it to others if you can. We need your help, and whatever form that takes could make a big difference.