Help brave family welcome more children with extremely rare genetic condition: LifeFunder
(LifeSiteNews) — Gemma and Aaron DeWitt are the parents of four children, two of whom have a rare genetic condition which leaves them unable to move independently or speak. In October, the Catholic couple will welcome identical twin boys, both of whom have already been diagnosed with the same disorder as their brothers.
But abortion is not an option for the devoutly pro-life family. Through pharmaceutical trials, preparing for the material and logistical special needs, and inspiring faith in God, they are instead doing all they can to give their babies the best possible quality of life.
Four sons with the same genetic condition
The eldest two children in the DeWitt family, Rachele (13) and Moses (11) are healthy, but Ezykiel (7) and Jeremiah (5) acquired a rare genetic condition called Allan-Herndon-Dudley Syndrome (AHDS). Gemma is currently pregnant with identical twin boys, both of whom appear to have the same condition.
In AHDS, the thyroid hormone receptor site either fails to operate at all or isn’t working properly. The level of malfunction corresponds to the severity of disability that a child develops as he grows. Ezykiel and Jeremiah are unable to coordinate their movements, meaning they “cannot walk [or] sit on their own” and use special needs wheelchairs and walkers.
Therapy keeps them “medically stable,” their mother said, adding that her sons “seem to have a milder form” of the disease “because they do not have seizures,” which is a common symptom of this condition.
READ: Missouri parents awaiting the arrival of disabled twins, with unshakable trust in God
“The disease itself is an X-linked disease,” Aaron explained to LifeSiteNews in a phone interview. “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.”
Because women have two X chromosomes, Gemma added, the second one that isn’t mutated “substitutes my functions” but there is no extra chromosome to balance a mutated one in a male. The couple explained that doctors were able to diagnose their unborn twins “by taking a sample from the placenta.”
“Basically, any time we have a boy, we have a 50-50 chance of either of them getting the good X or the bad X,” Aaron said. “So, our oldest son is perfectly normal, our next two sons have the condition, and, as far as we can tell, these twins… have the condition. And so, that’s why we proceeded forward with the medication.”
While awaiting the arrival of their newest additions in October, Gemma is undergoing a trial medication with Dr. Roy Weiss, an endocrinologist with the University of Miami Health System. She is “the first pregnant woman to go through this trial,” which has previously been tested on “pregnant animals, and they found good results.”
“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 added that the trial also holds the potential 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.”
Both Gemma and Aaron expressed deep gratitude to Weiss for generously providing the trial treatment free of charge and accommodating their family’s situation by sending members of his team to their home in Missouri rather than having her traveling to Florida, allowing Gemma to stay with Ezykiel and Jeremiah.
They also reflected that “maybe God is putting us in this position” to help establish treatment for AHDS because – based on their experience in an AHDS support group – “many women” expecting boys diagnosed with the disease decide to abort the babies.
“We would not ever consider aborting at all,” Gemma told LifeSiteNews. “We want to rely on God’s providence for whatever comes.”
‘A different kind of life’
The DeWitts currently homeschool their two elder children, with Aaron working as a computer engineer from home and Gemma serving as a stay-at-home mother. Ezykiel and Jeremiah, though, attend public school five days a week, as those institutions are “the only way they can get the therapy they need.”
Gemma pointed out that, prior to the COVID-19 pandemic, they were able to have therapists come to their home and help the boys, but now such healthcare professionals prefer to be in schools. Both parents expressed that this was initially a great challenge for them, as Aaron “believe[s] the family should be as close together, working together, in the closest proximity possible” while Gemma found it “scary [to] not be able to control what kind of care they had” while out of the house.
When the kids aren’t at school, the family’s routine includes “carry[ing] the boys down the stairs” to get them dressed and fed each morning, helping them “get ready for exercise time, which is walking around the house” with their walkers and then returning to wheelchairs for meals. Once the twins are born, though, the daily routine will “be shifted.” They shared discussion of how Ezykiel and Jeremiah currently sleep in their parents’ bedroom, but they are hesitant to move one or both of them for fear that a medical emergency may occur without their knowledge.
Though the decisions have yet to be finalized, Gemma and Aaron have considered the possibility of moving their older handicapped son with his other siblings, since his sister “is familiar” with their needs or putting a trundle bed in their room for the boys and a crib for the twins.
Another adjustment that will need to be made is transportation. Currently, the family travels in a handicap accessible van that allows for wheelchairs to be conveyed. However, a larger vehicle will be needed so the family can travel together and spare the additional expenses of running two vehicles.
The parents also emphasized the importance of family prayer, saying that “we try to include God in our daily lives as much as we can.”
While both boys “seem to enjoy just being part of that prayer time with the family,” Aaron noted that Ezykiel will fold his hands when he sees others doing so and that “he likes it when people pray the Hail Mary, especially at church.” Gemma added that when the family attends high Masses of the Tridentine Rite, both boys “seem to be taken into this other world where they just look around and smile. It’s like they’re looking at something that we can’t see.”
Spiritual nourishment also provides comfort and strength for the parents as they prepare for the birth of their twins. Gemma explained to LifeSiteNews that both have been named after “saints we have a devotion to.” Iosef Maximilian is named after St. Joseph, patron of families, as well as St. Maximilian Kolbe, who offered his life for another Auschwitz prisoner so that man could care for his family. Binjamin Pius is named after “both [St.] Padre Pio and St. Pius X, who was known to cure several kids when he was still alive.”
“That gives us hope that maybe God will grant us a miracle,” Gemma said, adding that if not, they maintain hope that, when they are “hopefully” in Heaven, their children will no longer suffer and “will be completely cured.”
Encouragement for families overwhelmed by kids with special needs
“I couldn’t imagine life without Ezykiel and Jeremiah,” Aaron said when asked what words of encouragement he would share with families expecting disabled babies. “They are wonderful, wonderful kids who just smile.”
“These are people I’m going to see again in Heaven… I know that Jesus is resurrected, and so I look to that for hope.”
“[In] caring for a special needs child, you learn so much compassion and love that you don’t get to experience otherwise,” Gemma added, telling parents expecting disabled children that “it’s not the end of the world. It’s actually the start of a different kind of life.”
She emphasized that “there is help” to support families struggling to take care of special needs children, noting that “God’s providence is there” and “if we let Him work, He does wonderful, wonderful miracles.”
Friends of the DeWitt family have launched a LifeFunder to help provide financial support for the family once Iosef and Binjamin are born. More information on how to donate can be found here.
Gemma and Aaron also invite families to see their home videos featuring Catholic family life on a farm with their special needs children. Their page can be found on both YouTube and Rumble.
Help brave family welcome more children with extremely rare genetic condition: LifeFunder