Brooklynn’s Smile

This is Brooklynn. She is 5 years old. Brooklynn was born with a rare genetic disorder called Ectodermal Dysplasia (ED). Ectodermal Dysplasia is a rare genetic disorder that affects the development of the skin, hair, nails, teeth, and sweat glands. There are only 200,000 people in the United States that have this rare condition. You may say that 200,000 is a large number, but when you look at the fact that the United States has over 350 million people, this is a small number.

Brooklynn’s condition has affected her in many ways. She has no sweat glands, she has extreme skin conditions, her teeth are underdeveloped, pointed, and some are missing. To add on top of this, she also has many allergies to many foods.

How does this all affect her?

Brooklynn does not have the sweat glands that are much needed for your body to regulate temperatures. When you become overheated due to colds, fevers, sicknesses, or just from the weather, her body has no way to cool down. If Brooklynn cannot get her body to cool down, it becomes very dangerous and can even be life-threatening. Brooklynn carries a backpack cooler with water, wet towels, and ice packs, so if something happens, she has ways to try and cool herself.

Can you imagine being a 5-year-old who can’t play sports with the other kids in your class? Can you imagine being a 5-year-old who can only go to a parade for less than half an hour for fear that you will overheat?

Brooklynn has many allergies to many foods and has to carry around an epi-pen everywhere she goes, for fear she will eat something that many people who don’t have allergies take for granted.

Can you imagine being a 5-year-old who is worried every day that someone may give you a candy bar that has nuts in it, not knowing you can’t have it? That if someone bakes something and cross-contaminates it, you eat something that will make you sick. Although I understand many people have allergies and they learn to watch what they eat, she is still only 5 years old.

Brooklynn has extreme skin conditions where she has to have bi-weekly injections to keep her skin from drying out too much and cracking so much that it makes her bleed. Since her sweat glands are non-existent, her skin is very thin and extremely dry.

Then we come to her teeth, hence the reason for this request.

Brooklynn’s teeth are underdeveloped, pointed, and some are missing. She is at a rare stage in her small lifetime where her teeth are decaying and need extensive repairs. As part of this condition, her teeth are thinner and softer than the average person. Her tooth enamel has never developed, which has caused her teeth to decay faster than normal.

We found out this week that Brooklynn has no permanent teeth. The doctor needs to do everything possible to keep her baby teeth as long as possible, for her to have a normal quality of life. The extensive repairs and preventive needs are not covered under dental or health insurance. Teeth are considered to be cosmetic in the insurance eyes. It’s hard to believe that something we need to use to eat is considered to be cosmetic.

I’m writing you all today to ask for help. This is a young family that does everything possible to live a normal lifestyle on a very limited budget and is very much in need of help. The expenses for this treatment are overwhelming them. Anything you could give would be much appreciated, and Brooklynn will be ever so grateful for the updated teeth she will receive. This will allow her to not have any further pain and be able to eat in ways she has never been able to her whole life.

Just imagine biting into an apple for the first time. Or crunching on a carrot. These are things this little one has never been able to do.

Thank you in advance for your kindness. This family will forever be grateful to you.