Indira Dickson's 10-year-old daughter Kira has a rare genetic disorder causing profound cognitive and physical disabilities, including seizures. A few days ago, Kira suddenly developed a new type of seizure causing her mouth to open into a painful lockjaw, terrifying Kira each time it happens--at times so powerful her jaw has been dislocated.

On Sunday, January 10, Kira was airlifted from the hospital in Aberdeen, SD to Avera McKennan Hospital in Sioux Falls. A mere three weeks recovered from major knee surgery, Indira drove the painful, 200-mile drive alone to join her. Unfortunately, even the specialists at the new hospital are struggling to control Kira's lockjaw seizure episodes. As of January 12, she is still experiencing several each day.

Indira must stay at the hospital with Kira because of her age and her disabilities. Even if she could leave the hospital, her workplace is three hours away. The doctors cannot predict when Kira will be stable enough to go home, so Indira will not be able to earn money until Kira is able to go home. Of course, their rent and bills are not on pause, and hospital cafeteria food is not cheap. This fundraiser is designed to alleviate Indira's financial worries so she can focus on Kira's health.

But I need to tell you more about Indira, because her story is amazing and inspiring. 

Indira is no stranger to personal tragedy: she lost both her brother and her mother as a young adult. She also is a survivor of sarcoma bone cancer. 

She is the loving mom of two great teenagers. 

And she is Kira's mother, through choice and love: both of Kira's biological parents have abandoned her.

Kira entered Indira's life when she was four years old. (Her mother had disappeared when she was only two.) From the moment Indira met Kira's father, Indira was Kira's mom; Kira called her "mama" the first day they met.

Indira quickly realized that Kira had significant developmental delays and worked tirelessly to try to get answers and therapies. Kira made fairly good progress, although Indira was always sure the suspected fetal alcohol syndrome was not her only issue.  She pushed for but was refused genetic testing.

Sadly, in 2018, Kira experienced a massive regression after anesthesia for dental work. She suddenly stopped eating and drinking. Doctors did not take Indira seriously until Kira was so dehydrated she required hospitalization, and ultimately a G-tube for nutrition, which she still needs today. She lost most of the words she could speak.

This episode was enough to finally get the genetic testing Indira had sought unsuccessfully years earlier. The test revealed that Indira has a rare genetic disorder called Phelan McDermid Syndrome . This helped Indira to begin to get Kira more targeted medical attention.  

Unfortunately, her path has still been difficult. Kira began to experience seizures, and at one point suddenly lost the ability to walk. This new lockjaw form of seizure is her latest and possibly scariest situation.

Over the years, Kira's father only sporadically participated in Kira's care, leaving it all to Indira. His challenges with alcoholism increased. Last year, he took his younger son to visit family out of state, and NEVER returned. Indira learned he had suddenly gotten married, and he has not communicated with her about Kira since he left.

Indira has never wavered. She was scheduled to finalize her permanent guardianship of Kira *this* Friday, January 15 (now being rescheduled), with the ultimate goal of adopting her. She is a fierce and loving advocate for Kira, who is every bit as much her child as her biological children. 

Although I would not wish Phelan-McDermid Syndrome on anyone, I am honored that my son's sharing the same disorder has introduced me to this inspiring mother. I cannot imagine a more deserving family to help. Please share if you agree!