Lydia is vibrant 10-year-old whose life was completely transformed after being diagnosed with Common Variable Immunodeficiency in early 2024. Her mother, Kris, describes the lifesaving treatments that give Lydia the chance to live a normal, active life. Read more about Lydia's story below!
Please share a few sentences about your overall story living with PI.
My daughter Lydia (10 years old) has Common variable immune deficiency (CIVD) and she started SubQ igg therapy in May of 2024. Prior to receiving the CVID diagnosis and starting treatments she was literally a shell of a person.
She lacked energy, the slightest tasks would wear her out. After starting treatments life was literally brought back into her! She has so much more energy, she no longer spends her free time laying on the couch or stopping to sit down in the mall because the walking was too much, she even talks WAY more now than she ever did!
Sicknesses have been at a bare minimum since starting IgG, and Lydia's whole life has changed for the better. Without the Modell family pushing on and finding treatments for children like Lydia, I really don't think her future would be very bright. We were slowing watching out daughter just fade away and I am forever thankful for the Modells!
How and when were you diagnosed? Which specific PI disease do you have?
January of 2024 she was diagnosed, we did everyday antibiotics until May and then switched over to subq IgG treatments
How has treatment impacted your life? How did you decide this was the correct treatment for you?
Treatment SAVED her life! I honestly believe we were watching our child slowly die. Lydia had zero energy, she preferred to lay on the couch on any given day rather than go outside and play. If she did go outside to play, go to the mail, a fair, the grocery store, ANYWHERE really, she was just so worn out and would have to take breaks. This hardly happens anymore for her. She has energy! She is living a full normal childhood life with minimal restrictions.
Do you share your story with others online? If so, tell us what made you decide to do so.
I don't have a Facebook page or anything like that for her, but I do share some posts about her sometimes. I know I shouldn't be ashamed of her diagnosis and I should share as much as I possibly can about it to get the word out there, but sometimes it is hard to share because so many people just do not understand or care to understand what a Primary Immunodeficiency is, or why we have to do treatments.
Especially when people tell me they hope Lydia will outgrow this one day, or we need to expose her to germs, that's when it hits me that majority of the population really does not know about Primary Immunodeficiencies, and probably see these treatments as either unnecessary or temporary. That is usually when I feel a bit defeated and think maybe we just need to keep this to ourselves seeing as nobody understands.
If there's anything else you'd like to share with us, please do so below.
My heart aches for the Modells, we watched the documentary on Jeffery. I am so sorry they had to lose their son to PI, but I am forever and ever grateful that they kept on this journey long after Jeffery passed away so that other families like mine can have access to LIFESAVING treatments to keep our children healthy.