On Nov. 5, 2015, Bayley and Nathan Bullock found themselves the proud parents of a baby boy named Joshua.
Although little Joshua didn’t live long, his parents are working to make sure that his short life will have a positive impact on others.
Joshua McKee Bullock
“When I found out I was pregnant, Nathan and I were reading in the book of Joshua and fell in love with the character that was very strong and courageous,” Bayley said. “Joshua was a great leader full of integrity.”
The couple also loved the meaning of Joshua, which is “Jesus saves.”
At his birth Joshua showed signs that something was wrong, Bayley said, because he had a profound weakness.
“They called him a ‘floppy baby’ because he just flopped around and didn’t curl up or have reflex movements like most newborn babies,” Bayley said.
While their son was still less than a day old, the pediatrician spoke with the couple about the need to run tests, since little Joshua continued to exhibit weakness, including a weak/low cry.
“The pediatrician asked us if there was any trauma at birth and there was none,” Bayley said. “In utero, Joshua moved around but didn’t kick me very hard, which I realized in hindsight.”
Nathan and Bayley began to suspect their son might have spinal muscular atrophy, a genetic disease that affects the part of the nervous system that controls voluntary muscle movement, taking away their physical strength and the ability to walk, eat, and even breathe.
It’s also a disease that affects one of Bayley’s cousins.
Testing ensued, and unfortunately their diagnosis proved to be correct.
Their son was ill with SMA – the genetic illness that is the No. 1 cause of death for infants, impacting 1-in-10,000 births.
One of the specialists who examined Joshua said it was the most profound weakness he had seen in his 30 years of treating SMA patients.
“He said he would be surprised if Joshua lived even 6 months,” Bayley said. “I remember when he shared his expert opinion and just being in total shock and soon (I was) overcome with sorrow and even despair. I remember thinking, ‘I just got him. I don’t want him to be taken away so soon.”
The diagnosis that their son had been given such a short life sentence, she said, was heart-wrenching.
For the next two months Joshua fought bravely. And along the way he changed lives and inspired others.
“Every day, Joshua would use all his strength and might to breathe, eat, and bring joy to us with his contagious little smiles. Joshua had beautiful, piercing eyes that seemed to be more focused than any infant we had seen at his age. It was his way of communicating. Once Joshua’s eyes connected with yours, the intensity of his focus on you was remarkable,” Bayley said.
On Jan. 13, 2016, Joshua’s fight came to an end.
Making a difference
“We decided while Joshua was still living to have his life count for the glory of God and for bettering the world specifically by raising funds for Cure SMA,” Bayley said.
The group partners with families affected by the disease, offering a variety of support and assisting with access to resources, as well as leading research efforts in search of effective treatments and, hopefully, an eventual cure for SMA.
The couple had already done a fundraiser in Cleveland, Ohio, raising several thousand dollars, when they decided a run/walk in First Landing State Park – a place they had spent a lot of time with Joshua – would be an appropriate way to raise awareness and raise money for SMA.
So in November 2016 that first event, Jogging for Joshua, raised $8,000 for Cure SMA.
Jogging for Joshua is a 5k race with awards for the top two male and female finishers. Participants have an option of running or walking the 5k on a dirt path, or simply walking one mile on a paved path that is wheelchair and stroller accessible.
The Bullocks hope to host Jogging for Joshua every other year in Virginia Beach, to complement the event in Cleveland (which is near their extended family).
“All together we have raised close to $30,000 through fundraisers in memory of our son. We are grateful to build on Joshua’s legacy by giving back to the community of those living with SMA, (who are) continuing the fight for a cure,” Bayley said.
Those interested in taking part can find information about Jogging for Joshua online, and can simply donate to the cause there also.