The little girls, Julia and Agnes, blossomed, but a phantom was hidden deep inside each of them, the genetic code that sentenced them to early-onset Alzheimer’s disease.  Julie married her high-school sweetheart, John Noonan Jr .  The first of Julie’s ten children was born in 1942.    Julia loved to sing, enjoyed her children and filled their house with the smell of baking.  

In the early  1960’s Julia began forgetting.  At first the children found this amusing, and would tease their mom about what she was forgetting.  She would often not  follow through with discipline, such as letting a child who was grounded go out.  The kids often joked among themselves about her memory lapses.

By 1964, after giving birth to the tenth child of the Noonan brood, Julia’s forgetfulness began to become worrisome.    “One day Julia forgot to pick up one of her children at kindergarten.  Five-year-old Julie, done up in coat and hat, had sat waiting and waiting for her mother by the school door, but her mother never appeared.  Julia’s lapses were becoming more pronounced”  (Decoding Darkness:  The Search for the Genetic Causes of Alzheimer’s Disease). In 1965, Julia’s personality began to change.   Once a woman who could manage with joy all the duties of a busy home with several older children and three under the age of seven, she was now very tearful, confused and depressed.  Her husband, the oldest children and a few close friends were the first to notice these subtle changes.   This personality change and neglect of home and family affected all the children in many different ways, but the common thread for all was the confusion that engulfed their lives.

By 1967, Julia had significantly progressed to forgetting her responsibilities as a homemaker, wife and mother.  Imagine knowing the responsibility of needing to feed your children and not remembering where the pots and pans are located in your own kitchen. Imagine also the adolescent who is ashamed of this mother unable to fulfill her responsibilities or the pre-schooler simply wondering where mom is.    The children had no idea why she often forgot to cook dinner, lost their  father’s paycheck, or even forgot the basic emotional needs of caring for her five youngest children. Think about the emotional pain and agony the many children felt living in this confusion.   

”John Noonan was in such turmoil over his wife’s unexplained behavior, he had a hard time keeping his mind on his job as firefighter; managing the household and ensuring that the children at home were looked after was beyond him.  The very [three] youngest went to live with married siblings, and the older ones at home began filling their mother’s shoes and raising the others.”  (Decoding Darkness:  The Search for the Genetic Cause of Alzheimer’s Disease)

In the spring and summer of 1967, Julia had two series of shock treatments, yet her depression continued.   In December of 1967, at the age of 43, Julia Tatro Noonan was diagnosed with Alzheimer’s Disease. With this diagnosis, came the reason for her behavior, but not the end of the pain caused by it.   

In 1978, after years in a nursing home, Julia died of complications of end stage Alzheimer’s Disease. Her twin, Agnes also developed Alzheimer’s Disease in the 1980’s and died from complications of the disease.   With Julia’s death came a sense of relief, the struggle with Alzheimer’s Disease was over.

“Whereas Julie had understood so little about her illness, her ten children knew its name, knew its damage, and had a dim sense that they were genetically susceptible to their mother’s rare form of the disease.  (Decoding Darkness:  The Search for the Genetic Causes of Alzheimer’s Disease)    Julia’s children continued with their lives, raising families, running businesses, establishing careers.  They thought that with her death they had left the nightmare of Alzheimer’s Disease behind. 

“Malcolm – Julia’s sixth-born-remembers too clearly the June day in 1993 that he and his wife visited an older sister and her family at their lakeside cottage in New Hampshire.   Little about Fran – Malcolm’s fourty-four-year-old sister—resembled their mother. …With an IQ over 150, she was sharper than a tack, which is why Malcolm felt a fear rip through him when, for the second time that day, Fran picked up the blue-green embroidered bracelet off the hall table and wondered aloud where it had come from, and her daughter had to tell her yet again that she’d made it for Fran.  Later, Fran would ask a third time”  (Decoding Darkness:  The Search for the Genetic Causes of Alzheimer’s Disease) 

Gradually history repeated itself.  The familiar and haunting empty look in Fran’s eyes reminded each sibling of the same vacant stare that was received from their mother as children.  With Fran’s diagnosis came the stunning realization that each sibling is at great risk for this disease.  Each sibling has a fifty- percent chance of contracting Alzheimer’s Disease.  Already two siblings are diagnosed with Early Onset Alzheimer’s Disease and are in full time care facilities. 

“A grieving set in that would go ‘on and on.  We would find ourselves continually revisiting our losses,’ notes [older sister] Pat.  … They were realizing that since there was no escape, they wanted to mount an offensive.  It might have been different if theirs was the only generation facing Alzheimer’s.” (Decoding Darkness:  The Search for the Genetic Causes of Alzheimer’s Disease)   The knowledge that their twenty-two children and thirteen grandchildren, with more on the way, are also at risk for this disease has motivated them to find a cure. 

The Noonan family is involved in genetic research in as many ways as possible, hoping their assistance will speed researchers in finding a cure.  They have also spoken publicly to nursing homes, colleges and even before Congress.  The family has been featured on ABC’s 20/20 and the Leeza Gibbons show, and is always working to raise awareness regarding this terrible disease and to push for more research funds.   

In addition, the Noonan family has started and is actively involved in Memory Ride, which produces a cycling event, proceeds of which go towards Alzheimer’s Disease research.   One-hundred percent of funds raised by Memory Ride are donated towards research.  Operating funds for the Memory Ride come from corporate donors. 

As tragic as this disease has become to the Noonan family, they try to see it as they look at all of life, is the jar half full or half empty? They say half full!  They continue to put a name and face to the disease of Alzheimer’s.