Editor’s note: Thank you to checkered moon for sponsoring this week’s Chambana mom to know. Don’t forget to visit checkered moon for all your Mother’s Day shopping needs!
Jennifer Difanis is a Champaign “townie,” born and raised in Champaign and a graduate of Centennial High School. She works as a Patrol Sergeant at the Urbana Police Department. She has been married to her husband, Jeremy Heath, for seven years and they have one son, Joseph, 26 months. Joe was diagnosed with Chronic Granulomatous Disease at 16 months old. By the time of his diagnosis, Joe had lost a significant amount of weight, stopped growing, had blood levels so low he required two blood transfusions, and had a kidney removed. The family will welcome a second son next Wednesday. Her nominator says, “Even when life threw her some serious lemons, she had a smile on her face whenever I saw her and is nothing but positive. People like Jennifer are very rare and deserve to be honored.”
See why we think Jennifer Difanis is a Chambana mom to know.
Q: Joe is not his diagnosis. What do you want others to know about your son?
At 26 months, you would never know from looking at Joe that he was ever that sick and is living with this disease. It is important for my husband and me that we allow Joe to be as “normal” as possible. People often meet Joe with expectations of seeing a sickly child, which he is anything but.
Q: Tell us about the health condition Joe has and the medical challenges your family is facing.
Chronic Granulomatous Disease (CGD) is a primary immune disorder. Joe’s white blood cells lack an enzyme that protects him against specific types of infections. Joe can handle viruses, but fungal or bacterial infections can be fatal. His greatest area of vulnerability comes from environmental exposures that pose no threat to the general population. Joe cannot be around mulch, decaying leaves, yard waste, or freshly turned soil. His body is unable to put up any protection against the bacteria and fungi found in these types of places.
We are fortunate that the medical community has identified these specific areas of vulnerability. Joe is now on daily antibiotics and antifungal medications to help provide a daily defense against potential exposures. Doctors currently estimate that the drugs have a 72% success rate of fending off infections. They expect CGD patients, who respond well to the medications, to have one serious infection every five years. The success of standardized drug protocols, combined with significant progress in antibiotic and antifungal treatments for infections have taken this from a fatal disease of childhood into a chronic condition where patients are expected to live into their 20s and 30s.
In Joe’s case, his specific genetic mutation and extremely low level of properly functioning white blood cells have flagged him as a candidate for a bone marrow transplant. The bone marrow transplant is a cure for this disease. But the transplant process comes is a very lengthy path with its own set of risk factors, including strong chemotherapy conditioning and the potential for the donor cells to be rejected.
The scariest part of any medical condition or problem is dealing with the unknown. As much as we can, we have mastered living with CGD and have enjoyed a long stretch of good health. As we move forward and get closer to the transplant process, it opens us up to a new world of known and unknown risk factors. Our tentative plan is to have both of our boys undergo the transplant process early next year. Following a successful transplant, both of my boys would enjoy the rest of their lives with a properly functioning immune system and relegate CGD to a disease of early childhood they may never even remember.
Jennifer Difanis and her son, Joe, in a happy moment at home. Photo provided.
Q: What can the community do to help your family?
We ask that friends, co-workers, and members of the community consider donating blood, signing up for the bone marrow registry, or make a financial contribution to Be the Match. My family partnered with Community Blood Services in Urbana to celebrate Joe’s 2nd birthday with a blood and bone marrow registry drive. Joe benefited from having access to high quality donor blood exactly when he needed it most. We want to make sure that all families have access to the same lifesaving blood during their times of need. Additionally, the chance of either of my boys finding a bone marrow match from our drive was very small. However, by expanding the registry we hope to provide matches for other patients and families, many of whose needs may be more urgent and immediate than our own.
Q: You are pregnant with a second son, who also has the same condition. What are you most looking forward to as you welcome your second baby?
My husband and I learned I was pregnant with our second child two days before we got Joe’s official diagnosis. We had no idea that Joe’s medical issues were related to a genetic disorder and that additional children could also be affected. I had an amniocentesis and learned at the beginning of January that our second son was also going to have CGD.
This is not as daunting as getting Joe’s diagnosis because we now know so much more about the disease. We also have fantastic teams of doctors working with us from OSF in Peoria and the National Institutes of Health in Bethesda, MD. We are excited to have another child and for Joe to be a big brother. We are also confident that we are capable of avoiding the significant medical issues Joe went through prior to his diagnosis.
Most importantly, I know that my boys’ lives have purpose and meaning. With early diagnosis and appropriate treatment, this can be a manageable disease. Parents 20-30 years ago were given a death sentence for their children with CGD. I am blessed to have two boys who happen to share the same genetic mutation. We are optimistic that we will be able to cure our boys with a bone marrow transplant; and confident that in our lifetime stem cell research or gene therapy will provide an accessible cure for all CGD patients.
Q: You and your spouse are both police officers. Has being a mom impacted your work and if so, how?
Being a Police Officer requires an immense amount of time management. My husband works evening shift and I work night shift and we only have one day off a week together. Our schedules have blessed us with a very minimal need for child care. It also means that we really look forward to and prioritize our time together as a family.
I think becoming a mother has made me a better person, which in turn makes me a better Patrol Sergeant. I had the amazing support of the Urbana Police Department as we went through Joe’s medical crisis last summer. Being a Police Officer is so much more than just going to a job every day. We deal with the problems of the city every day, and that is what most people see of us. But we are also a unique family of people that relate to and support each other in ways that no other occupation allows.
Q: What experiences are you looking forward to as a mom of two?
I come from a big family and have four siblings. My older brother, Matt, and I are 20 months apart so we grew up being very close to each other. I am thrilled that Joe gets to have the sibling experience. I’m excited to look beyond our CGD lives and think of traveling with our boys and letting them experience new things, food, and places. My husband, Jeremy, and I are hands down each other’s best friends. I cannot think of a better partner in life to raise my boys with.
Q: How will you celebrate Mother’s Day this year? What would be the ideal day?
My perfect Mother’s Day this year will be spending it with Jeremy and Joe and having a new healthy baby boy home with us. If I’m feeling well enough, we hope to get the whole family to church.
Q: What advice do you have for any other parents in our community who have a child with significant medical needs?
I would recommend that any family dealing with significant medical needs invest energy in developing a trusted circle of medical professionals. Prior to this summer, we had no experience with OSF in Peoria. However, OSF, the St. Jude affiliate clinic, and Children’s Hospital of Illinois are now an indelible part of our team. Joe loves to see his doctors and they have provided the absolute best level of care any parent could hope for.
I honestly do not know how any family could get through this level of crisis without faith and prayer. Every day my prayers acknowledge that there is no much I cannot change and so many things I will never understand. We pray for patience, peace, perspective, and perseverance.
Jennifer Difanis was nominated to be a Chambana mom to know. Do you know of a mom or dad who should be featured? Contact us today!
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