Faces of HD

Our Miracle Girl Mi Mi is twelve years old, born August 17, 2000, the fourth child of five and resides in Dallas, TX. Mi Mi, born full term, had no health issues at birth and was a typical child, talking, running and playing with other children until age four and a half. She soon started falling often, speech began to slur and she distanced herself from others. That’s when we knew something was wrong. After several years of going to multiple doctors, Mi Mi was finally tested and diagnosed with Huntington’s and epilepsy in 2008. We learned the life-threatening gene was passed on by her biological dad, who was also diagnosed at age 37. Mi Mi was a straight A student in school. Everyone loved her smiles and hugs. Her favorite color is pink, favorite character is Elmo; she loved to dance, tickle you, and smile.

In 2009, the Huntington’s progressed, due to excessive medications for increased seizures. She was in and out of hospitals frequently, went from using a communication device to being non-verbal and from using a gate trainer to a wheelchair, to becoming totally bed ridden. Currently, she has 24 hour nursing care for feeding, bathing, dressing, etc.  Mi Mi also uses a mouth guard, feeding tube, bath chair, and a lift. She’s had hip surgery and a broken knee.  In August 2012, Mi Mi was taken to ICU because she went into an epilepticus status, due to stress from being put in traction instead of a cast, after hip surgery. She also developed pneumonia there. Mi Mi was having over two-hundred seizures a day. The doctors tried every medication they thought of, but nothing worked. We had them stop all medications because her body had gone into toxic shock. They finally gave up. Around August 20, the doctor came in her room to tell us that Mi Mi wouldn’t make it overnight. The next day she was still here. They were shocked. The doctor then told us that we could stay or go home on hospice. The next day we went home on hospice while Mi Mi was in a Tonic-clonic coma. She was having seizures ever twenty to thirty seconds. One week later she came out of it.  It’s now been over five months; Mi Mi is still here and fights each day to get better.

Although Mi Mi has disfigured her lip by extreme biting, due to severe seizures and now has to have plastic surgery, she’s endured extreme pain and suffering and faced many end of life situations, she’s been triumphant. Today we make the most of everyday by enjoying her smiles, reading, playing music to her and loving on her as much as we can. We are advocates for HDSA, the fight for a cure and will continue to bring awareness to change the way people see Huntington’s. We believe that God has purpose for her and we’ll never give up on our Miracle Girl Mi Mi.