Health

Actions

Chesterfield boy diagnosed with same genetic disease that killed his little brother

Posted at 10:40 PM, Jul 23, 2018
and last updated 2018-07-24 07:45:38-04

CHESTERFIELD COUNTY, Va. -- Sisters have come together to raise money for an organization that was there for their sibling at the most difficult time of her and her families lives. Three-year-old Cash Dharamsi died April 12, 2017 after being diagnosed with the flu.

“His heart rate just started getting slower and slower and you knew it was coming,” Cash’s mother Andrea Dharamsi said. “I looked at the head doctor and I just said is there anything else you can do? And she said no. So, I said I just want to hold him and they disconnected everything, and I just put him in my lap, turned off all the machines and just let us enjoy the last few minutes we had."

“I just wanted to hold him and sing songs to him. I played a little song to him on the ukulele and then we just went home empty handed,” she added.

Cash

That was the tragic end to a long road of pain that started for the Chesterfield family on a March 2015 morning.

“I woke him up out of bed and he was really sleepy,” said Dharamsi.

When Dharamsi couldn’t keep her then 15-month-old son awake, she rushed him to the emergency room where doctors eventually determined Cash was in acute liver failure.

“We heard the term liver failure then transplant,” explained Dharamsi.

Cash was immediately flown to the University of Pittsburgh Children’s Hospital where he underwent a 12-hour liver transplant March 18, 2015. His dad Bunty was his donor.

Before awakening five days later with severe brain trauma, his parents learned their baby had a Mitochondrial disorder called Polg or Alpers’ disease.  A genetic disorder, which was attacking his liver, brain and eyes.

Andrea Dharamsi

“They had done a lot of blood work to determine why a perfectly healthy 15-month-old suddenly had acute liver failure,” said Dharamsi. “They didn’t think he would live much longer.”

Cash returned home four months later, but needed around-the-clock care. A home health nurse felt this family also needed support from a free program called Noah’s Children, Central Virginia’s only palliative care service.

“Our holistic, compassionate approach encompasses the needs of infants and children, up to age 18, diagnosed with a life-threatening or life-limiting illness. We provide for the physical, emotional, social, and spiritual needs of our patients and their families,” the organization’s website stated.

“I think the most impactful side was they are there for your family as a unit,” said Dharamsi.

“In the last moments, my final thoughts were call Noah’s Children. They’ll know what to do and they did. They called the funeral home, had him call me and I sat there and mourned and grieved with my family and they did everything that needed to be done,” said Dharamsi.

A month after burying Cash, the Dharamsi’s son Cooper had a massive seizure.

“Two months later I got a call from the hospital and he had the same thing and I just couldn’t even believe it,” said Dharamsi.

The six-year-old boy was diagnosed with the same incurable Mitochondrial disease as his younger brother.

“The prognosis is terrible, so you just can’t dwell on that,” said Dharamsi. “We’ve already seen the worst possible scenario for this disease and we’re just hoping things are different for Cooper.”

While the future isn’t certain, Andrea’s two sisters and running partners wanted to honor the past by hosting a charity event for Noah’s Children.

Cooper

“It’s something we can do as a family,” Andrea’s sister Alison Opel said. “We can keep Cash’s memory alive and we can raise awareness for an amazing organization I didn’t know about before Cash got sick. I want other people to know about Noah’s Children and all the amazing work they can do.”

The sisters always use the hashtag #runningonstreetsofgold when they race, so the theme for The Charity Ball will be #dancingonstreetsofgold.

“We believe Cash is up in heaven running and playing when he wasn’t able to do that down here,” Opel said through tears. “We believe that’s what he’s able to do now.”

“The running on streets of gold is very symbolic we have strong faith he’s up in heaven having a ball.”

“He smiled enough for a lifetime because he had such a short little life. He had to get it all in there while he was here,” Cash’s aunt added.

The Charity Ball, is a ladies' night out that takes place July 28, from 8 p.m. - 12 a.m. at the Magnolia Green Golf Course. The event is open to the public and includes food, a DJ, dancing and auction. Tickets are $50. All proceeds will benefit Noah’s Children in Cash’s memory.

“Bunty’s first thing was let’s do a foundation or set up something,  so something good can come out of all this,” said Dharamsi of her husband.

“My first reaction was, I don’t want anything good to come out of this… My son died, I don’t want good to come of it you know?” explained Dharamsi. “That’d always drive me nuts, ‘everything happens for a reason.’ I feel like there’s not a reason that he died... But I know God can use everything and turn it around even when the devil meant for everything to destroy our family, to destroy our lives. God knows that’s not our outcome. That’s not going to happen with us. I just have to believe that.”

The family said their nine-year-old daughter Aubrey has not yet been tested for the genetic disease, but she has not shown any symptoms.