Beloved Daughter Dies From A Disease Only Thought To Strike The Elderly

Photo by Jelleke Vanooteghem on Unsplash

 

As a society there are certain negative medical stereotypes that we have unknowingly held on to.

Only dirty children get lice, only young people get chicken pox, and only older individuals get Alzheimer’s Disease are such stereotypes.

Some norms are meant to be challenged, but in the case of one little girl from Tennessee touched the hearts of all around her when it was sadly unveiled that she developed a disease no one expected.

Mary Mitchell Stewart began her life much like any other infant, and with two loving parents who doted on her.

However, when Mary wasn’t talking by the age of 2 her mother, Sarah Stewart, 37, became worried.

After a doctor ran some tests they were told news no parent ever wants to hear.

Their daughter had “a rare genetic disorder that causes children to lose their ability to speak and understand before causing immobility and death by the time they are teens,” according to Stewart’s interview with Today.

It was called Sanfilippo syndrome, otherwise known as childhood Alzheimer’s.

And just as in adult Alzheimer’s, the prognosis is dismal and the journey there is tough.

Miraculously, there was a clinical trial for gene therapy for Sanfilippo syndrome beginning at the same time as Mary’s diagnosis.

A glimmer of hope was shining in such a dark time for Mary and her family.

At first, Mary “thrived” on the gene therapy treatment. Being only the second child to receive it, they weren’t sure what to expect, but the pros outweighed the cons.

Stewart told Today how her daughter started strong, but then things took a turn for the worse.

We thought the gene therapy was doing its job and she continued to progress and was saying all kinds of new words, new phrases. The number of words that I was adding started to slow down and there were no new words and then she started to plateau.”

Years on the experimental treatment did not have the end result the family had wished for, and at the age of 5, Mary, also known as shug, passed away.

Although Mary died younger than most children with her condition, the parents have “absolutely no regrets” about enrolling her in the clinical trial.

Stewart shares her conviction in her actions:

“It was our one shot. I don’t think we thought it would be a cure. But we thought maybe it would slow the progression of the disease. You’re going to do whatever you can to help your child.”

When Stewart and her husband Mitch accepted the fate of their beloved daughter, they did what they could to make the most of the precious time they had with her.

One way they did this was to have “Doughnut Sunday” where they would enjoy her favorite treat with a candle in it as they sang “Happy Birthday” (Mary’s favorite song).

Mary’s 5th birthday is the last time they were able to sing her favorite tune to her.

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The last 6 months of Mary’s life were the hardest for the grieving parents.

It was like she was just this shell of a body that required all our time and attention,” Stewart said. “That was a very tough pill to swallow.”

It is hard to imagine how any parent can get through impossible times like that.

It is God who they relied on most to see their daughter’s presence as a blessing and her life a valuable contribution to theirs.

Stewart says to Today:

We just see that as God’s mercy on her because the disease is so ugly, so awful, so unimaginable. We’ve just seen God show up so much it’s undeniable.”

It is incredible to hear how these strong individuals were able to capture the light of their daughter without being drowned by the darkness the world was thrusting upon them.

In the end, it is a celebration of life that serves one’s memory justice, not the melancholy of death; and it seems Mary’s parents are able to do just that.

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