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Help brave family welcome more children with extremely rare genetic condition: LifeFunder

(LifeSiteNews) — Gemma DeWitt and her husband Aaron are faithful Catholics who attend the Traditional Latin Mass in Central Missouri. They have been married for 14 years and have 4 children, Rachele (13), Moses (11), Ezykiel (7), and Jeremiah (5). Gemma is a stay-at-home homeschooling mother, and Aaron is a computer engineer.

The two youngest children, Ezykiel and Jeremiah, have an extremely rare syndrome known as Allan-Herndon-Dudley Syndrome (AHDS). AHDS is a disorder of brain development that affects only a small number of children worldwide. The syndrome affects exclusively boys. It causes moderate to severe intellectual disability and problems with movement. Both Ezykiel and Jeremiah are wheelchair bound and unable to speak or walk. Their life expectancy, sadly, is severely limited.

Aaron and Gemma are extremely capable parents who provide consistent, loving care to all their children, especially their two sons with special needs. Although Ezykiel and Jeremiah have never been able to communicate in a traditional sense, I have personally witnessed the unmistakable looks of love shining in their eyes — and genuine happy smiles — as they interact with their family while sitting in their wheelchairs during and after Mass.

Gemma and her husband have always remained open to new life if it is the will of God. Gemma (who is 39) has suffered multiple miscarriages but has remained steadfast in her trust in God. Recently, after receiving a blessing from their priest, Aaron and Gemma rejoiced when they discovered that not only were they pregnant again, but that Gemma was blessed with twins!

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Going into the pregnancy, Gemma and Aaron knew that if the twins happened to be boys, there would be a 50% chance that they, too, would be afflicted with AHDS, just like two of their three brothers. While they prayed that they might be blessed with healthy boys (or girls who would not be afflicted), they had peace that God would provide and give them the graces needed to parent two more boys with this syndrome if it was His will.

Ultimately, Gemma and her husband received the crushing news that both the twins (identical twin boys) were indeed genetic carriers of Allan-Herndon-Dudley Syndrome. Gemma is scheduled to deliver the boys, whom have been given the names of Binjamin Pius and Iosef Maximilian, this October.

What makes this story newsworthy is the absolute acceptance and abandonment to God’s divine will that I have personally witnessed in the DeWitt family. In a circumstance that would lead many people to despair, they are choosing to trust God in His blessing them with two more special-needs children. What many people would consider to be an insurmountable and discouraging challenge, they are accepting with great grace and unshakable faith in God.

Interestingly, a doctor in Florida has taken an interest in Gemma’s pregnancy. Thus, she is now the first pregnant woman worldwide to take an experimental pharmaceutical therapy specifically designated for mothers of unborn children with AHDS, with the goal of lessening the effects of the syndrome. Dr. Roy Weiss, director of endocrinology at the University of Miami, is closely monitoring Gemma and her unborn children through a series of regular testing. The effectiveness of the medication will be unknown until the twins reach certain observable developmental milestones, around 6 months of age.

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The DeWitt family recently made a pilgrimage to Gower, Missouri, to view the incorrupt body of Sister Wilhelmina Lancaster, and while there prayed for the grace to accept the will of God regarding their unborn boys. They obviously prayed for a miracle, but they acknowledged that they are grateful for prayers offered for their family as they face the many challenges that inevitably lie ahead.

Additionally, the DeWitt family, in welcoming these two precious boys into their family, will undoubtedly incur substantial financial hardship. Currently, Gemma and her husband have a modified van that is customized to hold Ezykiel and Jeremiah’s two wheelchairs. When the twins arrive, the family will likely need a new van capable of supporting four wheelchairs, and not forgetting their other two children! This is obviously a lofty financial goal, and if LifeSiteNews readers can support such a worthy cause, I know this humble family would greatly appreciate it.

Aaron and Gemma have a beautiful, Catholic, pro-life outlook on their situation. Many people in their circumstances would not have the perspective they do. It is Jesus in their life that has set them apart, who has given them the view that these unborn children, despite their disabilities, are a precious and treasured gift from God. Their courageous decision to trust God, no matter what the outcome, is sure to inspire people from many diverse backgrounds.

“I want to give hope to parents who are carriers of this genetic mutation, that they do not just push the ‘easy’ button,” Gemma reflected. “My ultimate goal is for people to be encouraged, and not think of special needs children as a burden, but rather a beautiful gift from which we receive so much more than we give.”

Help brave family welcome more children with extremely rare genetic condition: LifeFunder