Nike rebuild her jaw and smile again

My brave and talented friend from Indonesia faces $40k in dental surgery (Here in the US). I will help fund “Nike’s” recovery. Will you also, after reading more?

$40k of dental expenses could wipe the smile off of anyone’s face. My friend, Nok Nike, has a rare double set of teeth. She discovered this after months of chronic headaches. Her dental problem has become a serious medical problem requiring a series of surgeries as well as soft tissue grafts and bone grafts. In Indonesia, Nike started a treatment that did not go well. 6 months ago she received a US work visa and relocated here. As you probably know, Nike’s dental insurance will not pay for the two-year course of oral surgeries. Although she can pay all of her normal life expenses, the dental surgery expenses are far from normal. Please consider pitching in to help repair and restore Nike’s smile and oral health.

Here is Nike with her cat, Zion. And here is an x-ray of her double set of teeth.

HOW I WAS LUCKY TO MEET NIKE 3 YEARS AGO IN INDONESIA

In 2019 I met Nike when I tried to recruit her to work at “Ashoka – Everyone a Changemaker”, the international NGO that created the field of social entrepreneurship. Nike had recently returned to Indonesia after earning her MBA at Babson College in Massachusetts. She had job offers to work in private industry, and also for the Indonesian government. However, Nike felt a calling to use her talents differently. She wanted to improve Indonesia and the world by helping growing numbers of people to use their talents to solve humanity’s most pressing social problems.

Ashoka was looking for talent, and Nike had a lot of it. Despite growing up poor in a rural area of Java, as a young girl Nike showed extraordinary mathematical talent. She started winning math competitions and became somewhat of a local celebrity. By combining her math talent with entrepreneurial drive, Nike created a tutoring business, a catering business, and an organic farming initiative in college.

This is exactly the kind of “changemaker” talent Ashoka works to celebrate, foster, and unleash. Nike agreed to join Ashoka in Indonesia in the role of regional recruiter of senior talent. We became friends by working together at Ashoka.

Below you’ll read more of Nike’s story in her own words. You’ll see examples of her compassion combined with entrepreneurial skill. You’ll also learn that the true cost of the oral surgeries Nike needs is more than $100,000. But $40,000 in generous support could suffice to heal her because she has been offered discounted care through a generous oral surgeon whom she met through kind US friends.

Nok Nike’s Story In Her Own Words

My name is Nike and I need your help. I suffer from a painful, debilitating condition that affects every aspect of my life and will become part of daily suffering for the rest of my life if not addressed quickly. I had hyperdontia, extra teeth pressing on my facial nerve. After jaw surgery to remove the extra teeth I developed odontogenic keratocyst, a type of tumor. Even after four surgeries (to remove the extra teeth, the tumor and face/jaw reconstruction) and endless hours of therapy, I still need major dental work to be healthy. According to several specialists I consulted, in the next 1.5- 2 years, I require a major surgical intervention including a soft tissue graft to treat my gums, another graft possibly from my pelvis or ribs to add more bone to my jaw and implants to replace several missing teeth. I will also need orthodontic braces to correct my jaw alignment.

I desperately need this work done as soon as possible. I’ve been living with some of my jawbone exposed and I’m dependent on painkillers to get through every day. This dental work is estimated to cost in excess of $100,000 --much more than I make in a year and my insurance will only cover $3,000. Through friends, I’ve met a good surgeon here in Washington, D.C. who was really moved by my story and agreed to reduce the cost of the treatment to a third of what she and her team would normally charge. But it will still be a huge drain on my limited resources. And that is why I am asking for your help to raise $40,000. If you could help me with a donation of any size please know that it will be gratefully accepted. Any amount will help…so I can get the treatment I need to live a normal life free from debilitating pain, neural and digestive problems and dependence on painkillers to make it through each day.

Now let me tell you a little more about myself and my ’backstory’...

My name is Nike. My mother was obsessed with gods and goddesses and named me and my brother after them. Nike is the Greek Goddess of Speed, Strength and Victory. I am Indonesian from Java and we believe each name is a prayer. My name has become the narrative of my life. I was born 3 months early in a farming community in a small, rural village. The hospital was too far away. My family feared that I wouldn’t survive as a tiny premature baby without medical intervention. Against all the odds I pulled through. My next challenge was when I was two and my mother had to leave me to work overseas as a domestic worker like so many other women in our village. But I survived and did well in school. When I was four, I could read and do multiplication and division. When I was 9, I won my first mathematics championship in my district. This led to a series of competitions in my teenage years. I moved from my village to Bandung,the capital of West Java, when I was 14 to get a better education. I kept studying and competing and eventually won prestigious scholarships to engineering school in Indonesia and later Babson College in Boston.

My mom, sadly, never witnessed all of those happy moments. She passed away when I was 20 after battling breast cancer for 4 years. I spent most of my childhood without her. She worked so hard and had to move abroad to give me an education. When she died I promised to dedicate my life so no child would have to go through the struggles and loneliness that I went through. . I joined Ashoka to have a platform and resources to bring hope to those in need and especially children and young adults just starting out in life.

In September 2020, I suffered a concussion when a cabinet in my tiny Jakarta apartment collapsed on me. The injury caused me to have problems with my brain functions resulting in light sensitivity, concentration issues, nausea, severe headache, migraines and insomnia. I was treated for months but my doctor was puzzled because my brain MRI showed improvement and the brain was healing well but I was still struggling with the headaches, migraines and severe head pain. The doctor suggested that I have a panoramic scan of my teeth to see if there was a nerve problem or issue in the head or jaw area.

This is the result of the scan.

I have an abnormality called hyperdontia which means I had extra teeth under my gum on my lower and upper jaw. The concussion triggered the head pain because some of the roots of my teeth on my lower jaw were pressing on the nerve. Growing up poor I never had a proper childhood dental exam so my hyperdontia was never diagnosed.

In January 2021, I was introduced to an orthodontist in Jakarta. She performed surgery to remove the extra teeth in February but couldn’t remove all of my extra teeth because the roots were really close to the nerves. Here's what the x-ray looked like after the surgery.

In March, 2020 I needed to travel to Boston after the first surgery. The Jakarta doctor put braces on my teeth in the hope of closing the big gaps in my lower jaw. Due to Covid lockdown I couldn’t return to Jakarta until August, 2021. By then the wound was healing but as you can see the root of one of my teeth was destroyed and I had lost significant bone density, especially on the lower jaw. The doctor attempted to fix the problem by performing a second surgery in September, 2021 to remove one tooth on the top and do a bone graft to reinforce my lower jaw. – Unfortunately, it didn’t end well. The doctor did more damage and I was left with 3 big gaps, 2 on the lower jaw and 1 on the upper jaw and the bone graft wouldn’t take.

My mouth was constantly bleeding and I couldn’t chew or eat properly, resulting in my suffering with gastroesophageal reflux disease (GERD). The messy surgery also left me with a cyst on the lower jaw, called an “odontogenic keratocyst”. This cyst is also referred to as a “keratocystic odontogenic tumor” because of its tumor-like tendency to recur following surgical treatment. The 2nd surgery also damaged nerves on my lower right lip causing me numbness until today.

As a result of this unsuccessful surgery, I needed to find competent oral and maxillofacial surgeons in Indonesia to fix the problems caused by the first doctor’s errors. The type of surgery I needed should be performed by a maxillofacial surgeon. Private Indonesian hospitals and dental practices quoted me a price of $60,000-75,000 USD to remove the tumor and work on the jaw augmentation project over a two year period. My employer, Ashoka Indonesia, provided me with basic insurance from the Indonesian government. My complicated dental problems were not covered.

In November, 2021 after weeks of searching in different provinces, I found a great oral and maxillofacial surgeon in Indonesia willing to work with me. I had to go through multiple hoops with hospitals and tests with different doctors and departments. Finally I underwent my 3rd surgery with a qualified maxillofacial surgeon on January 6, 2022. This surgery included multiple odontectomy to remove the cyst, sequestrectomy for the lower and upper jaw, and a bone graft.

After the surgery in January, the surgeon observed that I have a temporomandibular joint dysfunction (TMJ) because my jaw has shifted and teeth were lost on the left side. I only chew on my right side. I was referred to a different specialist , a prosthodontist, while continuing my jaw augmentation treatment. It turned out the bone graft on the 3rd surgery wasn’t enough to cover the bone loss from my jaw, especially the left side of my jaw. I was scheduled for another surgery on March 14, 2022. This surgery employed an autograft technique - Iliac crest bone graft, the surgeon taking some of my pelvic bone to be grafted onto my upper and lower jaws. The surgery was a joint effort between the maxillofacial surgeon and an advanced trauma, orthopedic surgeon. The surgery was performed under general anesthesia and I stayed at the hospital for 6 days. This is my jaw x-ray following the surgery

After the 4th surgery in March, I visited the hospital once a week for two months for check-ups. The initial healing of Iliac crest surgery should take 6-8 weeks. However, probably due to the multiple surgeries in 2021 and 2022, the doctor diagnosed a soft tissue defect. My gum was severely defective and the wound wouldn’t close easily. When I moved to Washington, DC with Ashoka in May, 2022, I was still in the healing process and some of the bone of my repaired jawbone has been exposed since then. I’ve been meeting with different surgeons and specialists here in DC to continue my treatment.

I’ve come a long way in my sojourn to find a dental solution --almost two years, Indonesia to Washington, DC. From too many teeth I now have fewer teeth than normal adults. I am currently living with my jaw bone exposed. I have to carefully brush my teeth after every meal to prevent new infections and jaw bone damage. And I am in pain and dependent on pain-killers to get through each day.

To finish the process, I am going to need several more procedures/surgeries over the next two years because adding new bone and shifting the jaw takes time. I will need soft tissue graft surgery to treat the gum. I will need another bone graft surgery to add more bone density, especially to the left side of my jaw. I will need orthodontic braces to correct my jaw alignment and implants to replace the missing teeth.

To do these procedures I need a team of specialists: Oral Maxillofacial, Prosthodontist, Orthodontist, Periodontist. One team of doctors in DC quoted me $100,000 for the treatment. My insurance will only cover $3,000.

Another path I explored was to go to a university hospital so my case might be presented as a research/learning opportunity in exchange for a 50-70% price discount. I met with Howard University who ultimately referred me to the University of Maryland because Howard doesn’t have the full complement of specialists .

Thank you so much for reading my story in all its painful detail. If you could help me to pay for my surgery, I will be eternally grateful. Every donation, no matter the size will help. If you have friends who might be moved by my cause please also share my story. And thanks so much for the love, good wishes and support I have received. You cannot know how much this cheers me up during this difficult time. Thank you all. Thank You, Thank You!…

Love,

Nike