Aleena Hope Miller, who is a described as a spunky girl who loved to tell jokes, died Thursday afternoon. She was 7.
Born with a genetic disorder with a typical lifespan of 6 months to 2 years, Aleena had already beaten the odds having lived a challenging, but hopeful life with Spinal Muscular Atrophy (SMA) Type I, which is the most severe and fatal form of the disorder.
Unable to move or breathe on her own, Aleena used a special computer to communicate.
"The digitized voice coming from the computer usually catches new visitors off guard and surprised laughter follows. The sight of this little 44lb seven year old girl surrounded by computers and technology is intimidating, but with this one statement I’ve watched her become a little girl again in the eyes those who visit our home," said Aleena's website written by her parents.
"The laughter from her first attention getting hello usually feeds a barrage of quick jokes and crazy sounds:
“What did the bald man say when he got a comb, I’ll never part with it."
While Aleena's illness prohibited her from breathing on her own or speaking, she loved to learn, read books, and watch Barbie videos.
She also loved to participate in the Daisy Troop at Ashford Park School, and enjoyed her twice weekly sessions with a music teacher.
"Aleena fought every day of her life for the time she had, and she knew more than anyone the value and love of her friends. Thursday afternoon the fight became too much to bear and she is now in the arms of her Savior. This event was very sudden and has left us all unprepared. We are incredibly grateful to those of you that knew her and took the time to be part of her life," wrote Aleena's mother Stephanie Miller in an email.
Aleena's life was celebrated in a memorial Monday morning. In lieu of flowers, the family is asking that donations can be made to the Hope and Light Foundation.