Prior to John and Carol Patterson’s wedding this past November, the couple knew it didn’t make much sense to ask for wedding gifts.
After all, the couple already had full households and had enough problems combining their homes and possessions. Any gifts would’ve just added to the existing clutter. That’s when they decided to pursue the next best thing – giving back.
“We decided that we would do a charity,“ John said. “I pushed for BDSRA, and Carol came along fairly quickly because it is such an important organization with respect to the Batten families and the Batten research and all that.”
John is a grandfather to two CLN3-affected patients and a member of the BDSRA Foundation Board of Directors. His Batten journey as a grandfather began around five or six years ago when his grandson, Gabriel, started having vision problems.
Gabriel was originally diagnosed with Stargardt disease until he received his Batten disease diagnosis after a visit to the National Institutes of Health (NIH). Gabriel’s sister and John’s granddaughter, Nora, traveled down a similar path to her diagnosis when she, too, started having vision problems a couple of years after Gabriel.
(Pictured from left: Gabriel, John, Carol, and Nora at John and Carol Patterson’s wedding on November 26, 2022)
Since the diagnosis, John has traveled to every in-person BDSRA Annual Family Conference, his first being the 2017 conference in Pittsburgh. He also helps care for Gabriel and Nora alongside Carol to give his son and daughter-in-law, James and Bridget, much-needed breaks.
“It’s a great place for the Batten mom and dad to talk to other people and grandparents,” John said of the BDSRA Annual Family Conference. “So, it’s been a tough 5-6 years, but it’s one that we’re working through at this point.”
With the help of family and friends, John and Carol’s impact would stretch beyond their grandchildren to fellow Batten families.
John worked with BDSRA to produce a personalized donation page including a family photo and the wedding invitation. The unique link was printed on the wedding invitations. The couple’s guest list included family, friends, their church family as well as members from two other churches where Carol served as a deacon.
Between the online donations and checks mailed to BDSRA, $9,283.80 was raised, nearly doubling John’s expectations.
“It was wonderful, just wonderful,” Carol said. “Our church family has also met the entire Patterson family. They’ve seen the children, so they know that it’s devastating as they go through their journeys.”
“I was very surprised and very happy, and it said a lot about the regard Carol and I are held in by our family and our church community,” John said. “So that was very, very nice.”
The donations were the icing on the cake for what was the perfect wedding day for John and Carol – one that saw Gabriel and Nora participate in the ceremony by carrying up the communion wine and wafers.
John believes the wedding donations introduced others to the Batten community and the reality of the disease. Carol is among those recently introduced to the community.
“The amount of love that families provide for these children who do require a lot of care…is just amazing,” Carol said. “I can’t tell you how much respect and admiration I have for James and Bridget in their everyday life at home.”
A relationship that began as a friendship back in 1979 has blossomed into a strong companionship – one filled with gratitude thanks to the generosity of family and friends who have made a positive impact on the Batten community.
“Our hearts were absolutely filled when this happened,” Carol said. “We would have been happy no matter what was contributed. But this amount of money, knowing it will be used to help so many, is priceless. That will always be something we’re proud of.”
