I want to shed some light on a topic that most people don’t realize exist in the world today. My son Asher has many physical characteristics that let it be known he has Down Syndrome, yet there are kids all around the world battling illnesses and we would never know it by looking at them. I consider these kids, as I do my own, to be our very own modern day hero’s. I wanted to share a post my sister wrote about her hero, who just so happens to be my niece. She may not have a disability, but like all children who do, she battles her own invisible illness every day. I hope by sharing this post, more awareness will be spread and people will have a better understanding of what these kids go through.
My daughter Riley has Primary Immunodeficiency and Bronchiectasis. Primary Immunodeficiency is a group of disorders in which all or part of your immune system does not function properly. In Riley’s case, she has low levels of the immunoglobulin IgG and IgA. IgG is an antibody responsible for helping the body fight 80% of bacteria and viral infections. It protect the body’s mouth, sinuses, lungs and GI tract. Riley also does not build antibodies to certain vaccines. Bronchiectasis is essentially lung damage from repeated lung infections that have caused the airways to widen and weaken. It makes it hard for her to clear mucous which increases her risk for infection even more.
“IgG is an antibody responsible for helping the body fight 80% of bacteria and viral infections and it protect the body’s mouth, sinuses, lungs and GI tract.”
She had an ear infection at almost all of her doctors visits her first year of life. It would clear up with antibiotics, but then come right back within a week or so. At just 10 months old she had ear tubes put in. Ear infections and ear tubes are fairly common with young kids, so I didn’t worry too much. But over the next few years she seemed to have a constant runny nose and cough, she caught every stomach bug that went around, and always got UTI’s. She would get sick even after taking a round of antibiotics for an infection. Over the next few years she was tested for every common and rare cause of frequent infections. She had numerous hospital stays for aggressive airway clearance and IV antibiotics. Eventually at 4 years old it was obvious something was going on. She was given a vest which she wears for 20-30 minutes 2-4 times a day. It attaches to a machine that causes the vest to vibrate and loosen the mucous and the infection in her lungs. Along with the vest she was started on rotating antibiotics and a handful of other medications and daily breathing treatments. We went years thinking she had a rare genetic disorder known as Primary Ciliary dyskinesia. Because of its rarity, PCD is extremely hard to 100% diagnose or rule out. Finally we saw a doctor that specializes in PCD and we were able to scratch that off our list.
“Eventually at 4 years old it was obvious something was going on.”
Eventually, because of her low IgG, she was started on IVIG. IVIG is made from human blood plasma. It is given through an IV infusion usually every 28 days. It essentially replaces her low levels of IgG. So every month our favorite nurse comes to our house and starts an IV on Riley. She receives IVIG for over SIX hours. IVIG comes with many side effects. She is usually very tired and weak the week her infusion is due because the replacement antibodies begins to leave the body after 3-4 weeks. After the infusion she is tired, has a low grade temperature, body aches, and a headache for several days. She is at her absolute best the 2 weeks in between, which is not a long time by far, but we will take good days when we can! Along with IVIG she still takes an antibiotic every day, does some form of airway clearance, and all of her other medications/breathing treatments.
Despite all of the challenges she is faced with, Riley is a competitive cheerleader. And when I say cheerleader, I don’t mean “rah-rah” cheer. I mean she is in her gym for 15 hours+ a week tumbling, stunting, practicing, blood,sweat and tears. She works year round to increase her tumbling skills and practice’s to compete with her team. She absolutely blows me away with her talent and ability to learn and improve. Her determination is truly amazing. No matter how she feels and no matter if it’s infusion week ..if Riley has a class or practice; she will be at that gym. Along with cheer, she has always worked hard to keep up with her peers and make good grades at school. This year she has even joined an advance program where she has to learn and test quickly and she has excelled so much.
“Despite ALL of these challenges. Riley is a competitive cheerleader. And I don’t mean “rah-rah” cheer. I mean 15 hours + a week of tumbling, stunting, practicing, blood,sweat and tears.”
No matter what obstacles my daughter has or will face in the future, she continues to smile, inspire and shine! You see, my daughter has an invisible illness. On the outside she looks like a healthy child, but she has endured more procedures and needle pokes than the average adult could handle. Yet she continues with the most positive outlook on life. She has been knocked down too many times to count, but she will always get back up ! That is why she is MY HERO. You can learn more about spreading awareness for Primary Immunodeficiency by clicking
here.
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Thank you for sharing… My daughter, Alexis, had Primary Immunodeficiency too. Her story was much like Riley’s.