Bill and Victoria Strong are not a couple striving to achieve unrealistic goals. The craziest thing they have ever done together was to drop everything and travel the world for 13 months before moving to Santa Barbara from Los Angeles to start a family. Despite their lack of a plan, Bill quickly found work, they moved into the perfect family home, and they welcomed a blue-eyed baby girl into their lives.
For the first nine weeks, Gwendolyn was the perfect baby, passing all of her newborn screenings with flying colors. So when they found out she had Spinal Muscular Atrophy (SMA), the family was blindsided. “There is no family history,” says Bill, “there was no cause for any concern.”
Now the Strongs know that the presence of the recessive gene that causes their daughter’s disease is shockingly widespread - the most recent study shows that nearly 1 in 30 adults may be carriers. There is a simple screening process recommended for all prospective parents that determines whether or not they carry the gene. The problem is that many parents don’t know to ask for it and many obstetricians don’t know to offer it - a problem that could be solved by the spread of SMA awareness.
On the morning of Gwendolyn’s first set of shots, the Strongs noticed that she was excessively “floppy.” By that night, she was completely paralyzed. Gwendolyn was initially diagnosed with infant botulism, a rare but treatable illness. Her condition, although symptomatic of botulism, was actually caused by a small virus paired with the debilitating effects of SMA. While they were informed that SMA was a possibility, the Strongs were also encouraged that their daughter had botulism, despite two negative tests for the illness.
What they didn’t know at the time was that there is a simple blood test that would have revealed their daughter’s disease much earlier. “That was the missing piece,” says Victoria. The Strongs were told that the only way to test for SMA was with an intrusive muscle biopsy. “She seemed to be improving, so why would we put a healthy baby who’s improving through a biopsy just to rule something out:The blood test should have been ordered on the day we were hospitalized.” Although they could easily be upset with individual doctors, the Strongs know that this failure only demonstrates a critical unawareness of SMA.
Once their pediatrician, the “amazing” Dr. Abbott, informed the Strongs about the blood test, it was only four weeks before they received the positive result. “At that point, it’s one number on one sheet of paper that determines the life of your child,” reflects Bill, “It’s the most bizarre thing.”
Once they received the result, the Strongs were told there was nothing they could do. “We were told to just take her home and love her,” they said, but both Bill and Victoria knew they could not justify inaction while they watched their daughter degenerate.
Thanks to Victoria’s sister, the Strongs were able to contact SMA experts across the nation, finding that there is a leading research team just a few hours up the 101 at Lucile Packard Children’s Hospital at Stanford. Gwendolyn left Stanford on a plethora of life-assisting machines and with a feeding “G-tube” to ensure her proper nutrition. Approximately 10 days after their return, one of Gwendolyn’s lungs collapsed.
This traumatic event opened the Strongs’ eyes to the individualized healthcare offered in Santa Barbara. Thanks to the collaboration between Dr. Pickert at Cottage Hospital’s Pediatric Intensive Care Unit with LPCH and Dr. Abbott, Bill and Victoria realized that Gwendolyn could be appropriately and efficiently cared for without leaving Santa Barbara. It was during her recovery from her collapsed lung that Bill had an epiphany: “She was fighting through this collapsed lung and looked at us, a nine month old baby. ‘I’m fighting through this, I’m going to make it through this, you guys need to fight for me.’”
Since her recovery from the collapsed lung nearly one year ago, Gwendolyn hasn’t been hospitalized and the Strongs have made sweeping strides in the campaigning of SMA. When they learned that researchers had signed a written statement proposing that a cure for SMA could be reached within five years, the Strongs threw themselves into the arena.
In an effort to pass the SMA Treatment Acceleration Act in Congress, which will organize research and expedite the clinical trial process through federal support, the Strongs have created an online petition at petitiontocuresma.com. Although stem cell research is being explored as a therapeutic cure for SMA by the private corporation California Stem Cell, the SMA Treatment Acceleration Act does not advocate or fund this research. The most promising research to date involves compounds that address the missing protein that causes SMA using FDA-approved drugs.
In conjunction with this petition, Bill and Victoria have also helped create The Gwendolyn Strong Foundation to organize awareness and rally funding. Their latest fundraiser began a few weeks ago when Bill and Victoria realized they could raise money while travelling across the country with Gwendolyn. (See sponsoramile.com.) This past Sunday, the Strongs departed from Santa Barbara destined for Vicksburg, Mississippi, where Gwendolyn will finally be united with her 104-year-old great grandfather, Harry Gillespie. Gwendolyn is Harry’s 13th grandchild, but the only one he hasn’t met yet. Victoria says she had always planned on visiting her grandfather with Gwendolyn and Bill “knowing that my time with him was limited. I never imagined that my time with my daughter would be limited as well.”
The Strongs are traveling in Bill’s sister’s RV, which is wrapped in corporate sponsor logos and SMA banners, hoping to spread their enthusiasm and SMA awareness to each town they pass along the way. They acknowledge that they have a busy trip ahead of them, but their smiles reveal a happiness that no beeping machine can extinguish.
“We’re unbelievably fortunate to have this time,” says Victoria. The Strongs will be updating their blog daily as their trip progresses. To follow along, see gwendolynstrong.com.
Ty Manning is an Independent intern.