CHICAGO (NewsNation Now) — Through new medical innovations, parents with Huntington’s Disease are able to choose if they want to conceive a child with the disease or not. The process to undertake Invitro Fertilization is expensive.
For Dallas couple Rachel and Cameron Salstrom, it’s how the first-time parents conceived their newborn son Jackson. Rachel has Huntington’s Disease.
“My dad was not diagnosed with Huntington’s Disease until he was in his 50s. We didn’t know that my grandmother had it,” said Rachel Salstrom.
Salstrom said she turned to IVF so she would not give birth to a child with the deadly disease. Huntington’s is a debilitating disorder that kills nerve cells in the brain. It has no known cure.
At just 23, Rachel discovered she had Huntington’s. She made a tough decision to get her tubes tied within 6 months.
“I just couldn’t imagine the guilt of knowing that I had passed that to someone knowing that there was a chance of it,” she said.
The brain disorder causes tremors, inability to talk, walk, memory loss, and eventually leads to death. When the pair first started dating they ruled out having children of their own — until they received a grant from Help Cure HD.
“We had talked about the acceptance of not having children. Because we hadn’t heard anything and we figured with all the applications and everything it was a long shot,” said Cameron Salstrom.
The program allowed them to conceive using IVF for free. Then doctors took a biopsy of the embryos and only implanted the ones without the HD gene into her womb. In the eyes of these new parents, this medical innovation is a miracle.
After two rounds of IVF, she finally gave birth even during a pandemic.
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“He ended up going to the NICU for 48 hours and we weren’t allowed to see him. Because of the Covid so, then we got him back and we just lived in masks,” said Rachel Salstrom.
Although the Salstroms turned to science to create a baby free of Huntington’s; other families have not made that choice.
At 19, Camille Tulenchik became pregnant with her first child, Elli Hofmeister.
“I knew that she was at risk. I knew that actually, her dad had Huntington’s in the family. So after I was pregnant, we talked about it,” said Camille Tulenchik.
She decided to keep her baby knowing there was a 50% chance the child could one day be diagnosed with Huntington’s Disease.
“We just took our chances, and you know, and she’s beautiful and I couldn’t live without her. That’s for sure,” said Camille Tulenchik.
Doctors say symptoms of Huntington’s Disease normally appear between the ages of 30-50. But Camille says Elli started having learning issues early on, and in middle school her motor skills started to fade.
“By the time she started her freshman year in high school, they asked if she had speech therapy. Because she was slurring all of her speech,” said Tulenchik.
That’s when she realized her daughter might have Huntington’s. Doctors told her what Elli had was more progressive. It’s known as JHD, Juvenile Huntington’s Disease.
“I figured we had years and years before I had to worry about it. I thought science and medicine are making advances every day, so we have lots of time. I did not know about Juvenile Huntington’s until I had all these question mark things happening,” said Tulenchik .
Now Elli, 22, can no longer walk or care for herself. Her mother is her primary caregiver.
“It’s hard to talk,” said Elli.
Even while battling COVID-19 herself, her mom still helps to feed, treat, and play with her daughter every day. Tulenchik says Elli is her greatest blessing.
“I wouldn’t change my choice ever. She’s a gift. God gave her to me for a special reason. That’s for sure,” said Tulenchik.
Tulenchik is leery of using IVF to prevent having a child with the disease. But she does understand why other families choose to do so.
“I understand why people want to have a baby that’s not going to have HD. Because it is a sad and hard disease. But you also miss out on all the other gifts of life and the gifts of this beautiful spirit,” she said.
She believes one day science could be the key to help cure people living with Huntington’s.
“I would love to see them to be able to turn off parts of that… that make you lose the ability to walk and lose the ability to talk,” said Camille Tulenchik.
“Me too,” said Elli.
Dr. Danny Bega is working on just that. He is a movement disorders specialist at Northwestern Medicine.
“Juvenile Huntington’s Disease is when the disease symptoms start before age 20. So the average age of onset for Huntington’s Disease is around age 40. About 10% of people will present later than age 60. And about 10% of people will present under age 20,” explained Bega.
Through his research, he is trying to find new treatments for Huntington’s and studying more about a theory known as gene silencing — which attempts to stop the DNA from creating the Huntington’s trait.
Theoretically, this type of treatment would essentially silence the genes that are telling the body to create the disease.
“Because this is a disease that has the same gene mutation that causes the same disease in everybody and we know what it is and we can identify it. The question is can we stop it. By stopping the way DNA creates the protein,” Bega.
His program is still in the early phase, but he says he believes one day, there will be a method to curing Huntington’s.
“It’s really realistic to think that in our lifetime. We’re going to have a drug that actually has a meaningful impact of the disease progression, actually slowing down the disease,” said Bega.
It’s a glimmer of hope for both families.
For more on Huntington’s Disease, click here.