A Warrenton Lifestyle article helps solve a local family’s 57-year-old mystery
Story By Jillian Morris, Photos by Kara Thorpe
In the May 2017 issue of Warrenton Lifestyle Magazine, I shared the story of my son, Vaughan and did so because I wanted to make a difference. I wanted others to not feel alone like I did when I was waiting for a diagnosis for my son, Vaughan. For anyone reading the article I wanted to provide hope – for those who are a mother of a special needs child.
Our story of receiving the rare disease diagnosis of Bohring-Opitz Syndrome (BOS) was not the end, it was the beginning of our journey. I hoped sharing my personal situation would mean I succeeded in educating people that this type of journey has many rewards. Since my article was published, I feel many acts from a higher power occurred. I realize many people are skeptical about religion, but I think this is the only way to describe what has transpired since I shared our story.
Immediately after the article was published, I received an overwhelming and positive response from dozens of readers—my son and I are even recognized when we go out in public. Strangers have approached us and introduced themselves. Mothers in the middle of the checkout aisle teach their children that even though my son and many other children can’t walk or talk, it doesn’t mean they don’t understand —that they still feel love like any other person.
A local father even reached out to me and offered his valuable time to help me lift Vaughan in and out of the car and the grocery cart so I could shop with ease—I was moved to tears. Fauquier County Working Together Committee also hosted a fundraiser for Vaughan to help ease the burden of my expensive childcare costs.
One local family even donated a very expensive stroller to help make Vaughan’s mobility easier when I make quick trips around town. The generosity shown from Warrenton residents has been truly overwhelming. The heart-warming response from people volunteering to assist Vaughan and me has been an amazing experience—I have been deeply touched by these selfless acts of kindness.
There’s even more news to share. Approximately two weeks after my article was printed, I was contacted by a local family who wanted to meet me. The couple, Carl and Ann, explained they thought their son might have had Bohring-Opitz syndrome too and wanted to meet in person to discuss the similarities. I was skeptical at first because I now know there are several other syndromes with Opitz in the name, since the same doctor helped to find multiple syndromes.
I also know there is no comparing Bohring-Opitz syndrome (BOS) and other Opitz syndromes as the characteristics and severity are completely different. Having this knowledge, along with knowing the rarity of Bohring-Opitz syndrome, I was worried this family may have made a mistake like other people had in the past. The chances of another child, in the same town – let alone the same state – to have the same diagnosis as my son, is literally one in a million. However, there was still that question of “What if?” Could this family really have a child with this syndrome? Either way, I had to find out.
Carl and Ann live only seven minutes away from me and we met on a Sunday afternoon. This retired couple warmly welcomed me into their home and had me sit down at their dining room table. Several of their adult children were also there that day. They explained to me that they had a son named Gregory who was born in 1960, but he passed away when he was 10 years old due to pneumonia. Doctors were never able to diagnose Gregory’s condition.
When Gregory was a child they went to many specialists – even one with the National Institute of Health – but Carl and Ann were never provided answers. Gregory’s condition was a puzzle; no one knew what his condition was, or how and why it manifested itself. Some doctors told Ann it was because of a virus she had when she was pregnant; others said it was because of some medication she took. For years other family members wondered if it was a genetic condition which they could potentially pass on to their children and future generations.
Ann explained to me that once she read my article she couldn’t ignore the similarities between her son and my son, Vaughan. During our visit, an old photo album was placed in front of me. Carl and Ann asked me if I might be able to confirm if their son had Bohring-Opitz syndrome by looking at his photographs. I knew the physical characteristics of BOS well, but I am not a geneticist or a physician. I told them I probably could, but even as I said the words, I doubted my ability. What if this child had something other than BOS?
Immediately my doubts were erased as Ann opened to the first page of the album. I saw a photograph of a newborn baby who looked just like Vaughan did when he was born. Vaughan and Gregory could have been brothers! There was no doubt in my mind this child had BOS. Gregory had the exact same birthmark on his forehead, the same full head of dark thick hair, almond shaped eyes, and even the same hand position. A rush of powerful emotions suddenly hit me and I became choked up; all I could do was nod my head yes in response. This family had a child with BOS who was beautiful, perfect, and so loved while he was on this earth. Since the day we met, there have been several more visits with Ann and Carl and that included meeting Vaughan. Since meeting them, I have been blessed with the beginnings of an amazing friendship between us.
The chair of the Bohring-Opitz Syndrome Foundation, Taylor Gurganus, and her daughter who also has BOS, even visited with Ann and Carl. Taylor was able to put the family in touch with some of the geneticists to have Gregory genetically diagnosed through one of Gregory’s teeth the family kept. They kept hair and a tooth just in case the opportunity came where they would need a sample of his DNA.
Amazing things like this don’t happen by chance – it still doesn’t feel real. I still can’t imagine what Ann went through as a mother, trying to find an answer for 57 years, only to just stumble on an article one day … one that I wrote. Ann and Carl are the most kind and genuine people I have ever met. I feel so blessed that they opened their home and their hearts to me and Vaughan. The courage it took for them to reach out to me – to take a chance – shows how much love this family continues to have for their son. I feel honored they shared their son’s life with me and will continue to keep in touch with them.
I never imagined what an impact my article would have, especially so soon after it was written. I cannot imagine the peace of mind I have given this family; for them to know. The family explained I have given them a gift by writing that article. But really it is Ann and Carl that have given a gift to me: they have validated my efforts to help others – it is what I was meant to do along this journey. Our children and the love we have for them, even if they have passed, never dies and continues to connect us in ways we never thought possible.