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Nancy Flanders
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Human Interest·By Nancy Flanders
Pregnant mother becomes first to enter trial for medication to help her preborn twins
Gemma and Aaron DeWitt live on a Missouri homestead with their four born children, two of whom have a rare genetic condition that has left them unable to walk or talk. In October, the couple will welcome identical twin boys, both of whom have the same genetic condition. There are many doctors who might try to persuade the couple to abort their twin boys, and many parents who might heed that unethical advice, but the DeWitts are preparing for their youngest sons’ births with prayer, hope, and a plan.
The couple’s eldest children, Rachele (13) and Moses (11) did not inherit the condition — Allan-Herndon-Dudley Syndrome (AHDS) — but Ezykiel, 7 and Jeremiah, 5 both did. The condition affects only boys and Ezykiel and Jeremiah cannot walk or sit on their own. They use wheelchairs and walkers to move around the family’s home and property. They go to school where they receive the therapies they need to keep them “medically stable,” and they appear to have a “milder form” of the condition.
“The disease itself is an X-linked disease,” Aaron explained to LifeSiteNews. “So, Gemma is actually a carrier of that disease, and she actually has it. Basically, the mutation exists on one of her X [chromosomes], but it doesn’t affect women like it does men. Men are the ones who get affected by it because they have one X.”
Anytime the couple has a baby boy, there is a 50/50 chance that he will have the condition, depending on if they get their X chromosome from their father or mother. When they learned they were pregnant with twin boys, Gemma underwent chorionic villus sampling (CVS), which is when a piece of the placenta is taken to test for genetic concerns in a preborn child. It can be carried out earlier in pregnancy (10-12 weeks) than an amniocentesis (15-20 weeks).
As with many genetic conditions, there are ongoing clinical trials to find new ways to treat the conditions and help children have a better quality or quantity of life. Gemma decided to take part in a clinical trial of a medication aimed at helping prevent or slow the symptoms of AHDS. She is the first pregnant woman to go through the trial, which is led by Dr. Roy Weiss, an endrocrinologist at the University of Miami Health System.
“There was either a choice of not doing anything, and we knew the outcome being that the children would be disabled just like my other two sons, or going through this trial that had some risk of miscarriage but giving them the best chance to have a more normal life,” Gemma told LifeSiteNews.
She explained that the trial offers the chance to “have a treatment out there for other women that find themselves pregnant, expecting babies with the genetic syndrome that can be used eventually to treat the children in utero and have them also have a better life.”
The couple believes that God may have given them this opportunity — pregnancy with twin boys with AHDS — so that they can help create a new treatment for children with the condition. They said many women in their AHDS support group opt for abortion when they learn their baby boy has the condition. The couple hopes this trial will prove that abortion is not the answer.
“We would not ever consider aborting at all,” Gemma told LifeSiteNews. “We want to rely on God’s providence for whatever comes.”
The baby boys, Iosef Maximilian and Binjamin Pius, are due in October and the couple is hopeful “that maybe God will grant us a miracle.”
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Human Interest·By Nancy Flanders
Pregnant mother becomes first to enter trial for medication to help her preborn twins
Gemma and Aaron DeWitt live on a Missouri homestead with their four born children, two of whom have a rare genetic condition that has left them unable to walk or talk. In October, the couple will welcome identical twin boys, both of whom have the same genetic condition. There are many doctors who might try to persuade the couple to abort their twin boys, and many parents who might heed that unethical advice, but the DeWitts are preparing for their youngest sons’ births with prayer, hope, and a plan.
The couple’s eldest children, Rachele (13) and Moses (11) did not inherit the condition — Allan-Herndon-Dudley Syndrome (AHDS) — but Ezykiel, 7 and Jeremiah, 5 both did. The condition affects only boys and Ezykiel and Jeremiah cannot walk or sit on their own. They use wheelchairs and walkers to move around the family’s home and property. They go to school where they receive the therapies they need to keep them “medically stable,” and they appear to have a “milder form” of the condition.
“The disease itself is an X-linked disease,” Aaron explained to
Anytime the couple has a baby boy, there is a 50/50 chance that he will have the condition, depending on if they get their X chromosome from their father or mother. When they learned they were pregnant with twin boys, Gemma underwent chorionic villus sampling (CVS), which is when a piece of the placenta is taken to test for genetic concerns in a preborn child. It can be carried out earlier in pregnancy (10-12 weeks) than an amniocentesis (15-20 weeks).
As with many genetic conditions, there are ongoing clinical trials to find new ways to treat the conditions and help children have a better quality or quantity of life. Gemma decided to take part in a clinical trial of a medication aimed at helping prevent or slow the symptoms of AHDS. She is the first pregnant woman to go through the trial, which is led by Dr. Roy Weiss, an endrocrinologist at the University of Miami Health System.
“There was either a choice of not doing anything, and we knew the outcome being that the children would be disabled just like my other two sons, or going through this trial that had some risk of miscarriage but giving them the best chance to have a more normal life,” Gemma told LifeSiteNews.
She explained that the trial offers the chance to “have a treatment out there for other women that find themselves pregnant, expecting babies with the genetic syndrome that can be used eventually to treat the children in utero and have them also have a better life.”
The couple believes that God may have given them this opportunity — pregnancy with twin boys with AHDS — so that they can help create a new treatment for children with the condition. They said many women in their AHDS support group opt for abortion when they learn their baby boy has the condition. The couple hopes this trial will prove that abortion is not the answer.
“We would not ever consider aborting at all,” Gemma told LifeSiteNews. “We want to rely on God’s providence for whatever comes.”
The baby boys, Iosef Maximilian and Binjamin Pius, are due in October and the couple is hopeful “that maybe God will grant us a miracle.”
Live Action News is pro-life news and commentary from a pro-life perspective.
Our work is possible because of our donors. Please consider giving to further our work of changing hearts and minds on issues of life and human dignity.
Contact editor@liveaction.org for questions, corrections, or if you are seeking permission to reprint any Live Action News content.
Guest Articles: To submit a guest article to Live Action News, email editor@liveaction.org with an attached Word document of 800-1000 words. Please also attach any photos relevant to your submission if applicable. If your submission is accepted for publication, you will be notified within three weeks. Guest articles are not compensated (see our Open License Agreement). Thank you for your interest in Live Action News!
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