I meet so many wonderful people through my job as editor. Learning about people and their struggles, their triumphs and their passions is really what connects us as a community.
Culver City is full of special people. I recently met a family that touched me in so many ways.
Jessica Stoop contacted me back in August.
Just like any other family with young children, life is busy for the Stoops. She and her husband, Joe, have 3 little ones—Alicia (Ali for short), age four, JoeJoe, age 3 and 17-month-old Dominik.
But unlike most families, the Stoops have some major and life altering challenges to deal with on a daily basis.
JoeJoe has Spinal Muscular Atrophy (SMA). I had never heard of this disease; I’m sure that many have not. Once I learned about the devastating effects this disease has on children and their families, I knew I had to help shed some light on it—and the incredibly strong Stoop family.
SMA is a degenerative disease that affects the voluntary muscles. Those that survive face a life watching as their muscles slowly fail leaving them unable to walk, crawl, sit-up or even swallow.
It is a recessive disease – two parents who are both carriers of the gene that causes SMA have a one in four chance of passing the disease on to a child.
SMA crosses all racial, ethnic, religious and gender boundaries and while it is primarily diagnosed in children, it can affect people of any age.
Jessica told me that she notice something was off when JoeJoe was 5 months old. Ali was a year old at the time.
“I noticed that his development wasn’t anything like hers. Ali stood at 3-4 months; JoeJoe stood at 2 months and then at around 5 months he couldn’t any longer,” she said.
“He mastered sitting at around 6 months but showed no interest in crawling or exploring his surroundings.
“I took him to the doctor and asked for him to be more thoroughly examined. They told me that he was still within normal limits, but I had a mother’s instinct that something was not right.”
A mother always knows. Jessica was persistent. She is also a nurse and with her medical knowledge, she knew that she had to find an answer.
The Stoop family went to Shriner’s Hospital For Children where JoeJoe was seen by many specialists—still with no diagnosis.
Their one-year-old son was finally given a test called an EMG (electromyography). This involves sticking small, acupuncture-like needles into the muscle.
Electricity is then run into the muscles so doctors can see how they react. As you can imagine, this was agonizing for Jessica and Joe—and to their year old son who was completely awake for the whole procedure and too young to understand what was happening.
The results of that test showed JoeJoe’s muscles weren’t functioning correctly.
The next step was a consultation with a geneticist to discuss possible diagnoses.
While the family was dealing with the unknown results of JoeJoe’s health, Jessica found out she was pregnant with their third child, Dominik—who could also have this devastating genetic disease.
“When we met with the geneticist, I was 9-10 weeks pregnant. I will never forget that day,” Jessica remembered.
“The geneticist, explained SMA, and if the new baby had it he recommended abortion. Additionally, he told us that JoeJoe’s care would be very intense and many parents choose interventions to extend life, but he doesn’t recommend those. I could not believe it.”
“In a matter of minutes the geneticist, told me I should abort my baby and basically let my kid die. We left that appointment outraged, upset, fearful, and disgusted.”
Joe and Jessica, both raised Christian, knew that they could not do what the doctor was suggesting. They held onto their faith and came together as a family.
JoeJoe got his blood drawn and it was sent to the genetics lab. Jessica went in for an amniocentesis.
The results came in 10 days apart—JoeJoe’s on Joe’s 25th birthday. The amnio results arrived on the second day Jessica’s new job.
Both concluded the same—positive for SMA. JoeJoe was diagnosed as a Type II, because he was able to master sitting. And as for Domink they would just have to watch and wait.
“With news of this disease our faith was rocked. But God has definitely been faithful and has used this disease to strengthen our faith,” said Jessica.
“Our marriage has become very strong. We have had to learn how to communicate effectively, work together, encourage one another, and give each other breaks.
Joe is my best friend and I wouldn’t want to be going through this with anyone else. We are determined more than ever to advocate and spread awareness about SMA. I truly feel having a special needs child alerts you to the plights of many other families around you, and encourages you to try to make a difference.”
Daily life in the Stoop household is joyful and chaotic. Daddy stays at home with all 3 children, while Mama goes to work as a Public Health Nurse for the county.
JoeJoe has daily respiratory and heart rate treatments. Many children with SMA have problems with apnea and heart rhythm abnormalities.
He sleeps with a Bilateral Positive Air Pressure Ventilator to help regulate his breathing.
He has to get stretched daily to prevent the onset of contractures. He has to be put in various adaptive equipment to ensure his safety.
“We put him in a standing frame to promote bone, GI and circulatory health. On any given day JoeJoe could be going to physical therapy, occupational therapy, various medical appointments. We have started aqua therapy at the Culver YMCA,” Jessica said.
Both Stoops agree that they couldn’t do it without the help of family, friends and the Culver City community.
“We have learned to rely on family support. Both Joe’s and my parents live close by and are very involved in helping us out. It has been such a blessing, to have a night out with my hubby, or to be able to go run errands and come home to a freshly cleaned house. Our parents are awesome.”
Mayor Andy Weissman and the Culver City City Council have openly welcomed the Stoops to the city. Mayor Weissman proclaimed August as SMA awareness Month.
The Culver City Fire Department came to JoeJoe’s third birthday and brought with them the big fire truck. They even threw him a birthday party at the firehouse—with all the firefighters present. It was a three year old’s dream.
“We are so thankful to local businesses like Menchies, Shakey’s, Jiffylube and Pavilions for supporting the Muscular Dystrophy Association, and holding fundraisers to benefit neuromuscular disease,” said Jessica.
Joe and Jessica are in the process of starting a nonprofit organization, EXON 7, named after part of the gene that is deleted in SMA. They hope to provide seating systems for children with special needs.
“Much adaptive equipment isn’t covered by insurance and is ridiculously expensive, so this is a way we can help,” Jessica said.
This family has taken a leap into the unknown, with faith, love and hope leading the way. It’s so beautiful to see that. They are faced with enormous challenges—physical, mental and financial—yet they still want to help others in the process of their own learning.
And like any other family, the Stoops just want to be a part of a wonderful community.
“If you see us around town, don’t be afraid to say hi. We want to know our community, and all who live in it. We are so grateful to have put roots down in this awesome city.”
I think the people of Culver City are more than up to the task.
