Calleigh of Ridley Park, PA is a bright 8-year-old girl with a positive attitude who loves dancing and cats. She is also living with hypogammaglobulinemia, a type of primary immunodeficiency disease (PI). As she grew, so did her number of illnesses—despite the previous hope that her disease diagnosed at infancy was transient (she would grow out of it).
“I have a primary immunodeficiency disease. It's long and hard to pronounce. It means my body can’t fight germs, so I get sick,” says Calleigh. “I get infusions every Friday or Saturday to help my body fight all the germs. It takes about an hour for the medicine to go into my body.”
IDF Walk for PI raises money for children—like Calleigh—as well as people of all ages whose lives are changed forever because of their rare, chronic disease. The funds raised help to ensure that people with PI have access to lifesaving treatments and life-changing educational programming.
“I am walking to help people who can’t get infusions, like I do, for my PI,” explains Calleigh.
Most importantly, the funds raised from IDF Walk for PI support research that will one day give Calleigh, and all affected by PI, what they so strongly deserve: a cure.
Join us. Join Calleigh. Register today.
Take 2 Steps to Walk for PI
1. Choose Your City at www.walkforPI.org.
2. Choose How You Get Involved:
Form a Team, Join a Team, Register Individually or Make a Donation.
Calleigh along with her Mom, Barbara Ann, and Dad, Joe, shared a little more about why they are walking for PI.
- What does IDF Walk for PI mean to you?
Calleigh: I can meet new people who are like me and have immune deficiencies.
Joe: Hope for the future because money raised will go towards research.
- Barbara Ann: The walk is a huge platform for education and advocacy.
- Why do you walk?
Calleigh: I am walking to help people who can’t get infusions like I do for my immune deficiency.
Barbara Ann: We walk in support of our “Bean” Calleigh and all the families who are touch by PI. We talked with Calleigh about how fortunate we are to have been approved for the treatment her immunologist deemed best for her and that not everyone is as fortunate. We explained that funds raised by the walk can help raise awareness and advocacy efforts to ensure access to treatment for everyone.
Joe: I am walking for my daughter.
- How did you discover the walk?
Through the Immune Deficiency Foundation website which has been an anchor these past 8 years.
- What is your favorite part of the walks?
Not sure yet as it is our first walk! We are so excited!
- How has PI affected you and/or your family?
Barbara Ann & Joe: Calleigh (a.k.a. Bean) was diagnosed in infancy with hypogammaglobulinemia. We had hoped it was transient but as she grew (slowly), her numbers trended downward and her frequency of illnesses increased. She also had a severe allergic reaction to gluten which has been and still is controlled with a gluten-free diet. Calleigh began taking a daily prophylactic antibiotic about 6 years ago which helped tremendously but under the watchful eye of her immunologist, her immune system continued to deplete.
This past fall, it was determined that her hypogammaglobulinemia was a permanent diagnosis and the care team considered antibody replacement therapy. We decided to see how the fall/winter went on the continued daily antibiotic but did not make it past October before things went awry. Numerous severe sinus infections and a bout of C.Diff (Clostridium difficile had us back in the immunology office within eight weeks. We walked out with fingers crossed for insurance approval for her immunoglobulin (Ig) therapy. It took nearly a month and a peer-to-peer review between her immunologist and our insurance company, but her Ig was finally approved!
The Friday before Christmas 2017, we made our way down to CHOP (Children’s Hospital of Philadelphia) for Bean’s first subcutaneous infusion. Thanks to the amazing nurses and Calleigh’s positive attitude, it went really well! As did the second infusion at the hospital and the two at home after that under a nurse’s guidance. As a family, we settled into our “new normal” and kept our promise that we would fit her infusions into her life and not her life around her infusions. She’s a little girl with an adult understanding of a disease with no cure. She’s so open and matter-of-fact about her immunodeficiency and infusions. However, it never occurs to her that anyone should feel sorry for her - she’s living her best life - family, friends, cats, dance, Minecraft/Roblox – without being sick so frequently.
Calleigh: I have a primary immunodeficiency that’s really long and hard to say. This means my body can’t fight germs so I get really sick. I get infusions every Friday or Saturday to help my body fight all the germs. To get my infusion, I have to get two needles in my thighs. My mom does this for me. She gets a good pinch and puts them in fast. It takes about an hour and 15 minutes for the medicine to go into my body. I play on my computer or iPad and call my friends while I get my infusion. I like to have ice packs where the needles are so the itchiness goes away. When I am finished, I take out the needles myself and put my Band-Aids on. My legs are puffy but fade away the next day. My infusions let me go to school and dance. I don’t get sick that much and miss anything.
- What message do you have for other individuals and families affected by PI?
Barbara Ann: It is terrifying to get any diagnosis and have to navigate treatment but knowledge truly is power so educate yourself and your affected love one – even if they are a child. We found that making Calleigh an active part of her care team gave her understanding and ownership of her health which, in turn, fueled her confidence. We also made sure to educate our family, friends, school and dance studio so that they all could be partners in keeping her healthy both physically and emotionally and a full participant in all aspects of her life. Having someone to talk to outside of your “circle” can be extremely beneficial so we arranged to have school counselor check in with Calleigh on a weekly basis. Reaching out and involving those closest to us not only supported Calleigh, but supported us as her parents. Knowing we had a ready and willing support system was comforting. We know that not everyone is fortunate enough to have such support but the Immune Deficiency Foundation is ALWAYS there and there are some great private groups online. Reach out – you are NEVER alone!
Joe: Stay as positive as you can and be patient because it is tough at first but it does get easier.
Calleigh: It’s OK to have an immune deficiency and get infusions. I was scared at first but it’s just a little pinch that goes into your stomach, arm, thigh or IV and it’s not that big of a deal. You can make your infusions so you don’t miss anything. The infusions help you stay healthy so you can go do normal stuff like a normal kid even though you have a disease.
Thank you to Calleigh, Barbara Ann and Joe for sharing their story! Would you like to share your story to help educate and inspire others? Click here to contact us.