Lonnie Johnson

First post: Jan 13, 2018
During my pregnancy, my biggest fear was to see my baby hurt, or sad, or sick.... the thought never crossed my mind that maybe my baby will have SCID... probably because I had no idea what I‎t was until the love of my life and sweet new born son, Lonnie Mack Jr, was born with I‎t. SCID- Severe combined immunodeficiency also known as “the boy in the plastic bubble”, a disease where you are born with no immune system, in baby Lonnie’s case, no T cells. Which means he cannot fight off any type of infection if it enters his little body.... even the common cold could be fatal for our little man. I‎t is an unpredictable disease and cannot be prevented. For my little Lonnie I‎t is caused by a gene mutation that is unknown. In situations like this, SCID can and could happen to anyone, and is not genetic... This disease is so rare that the odds of being born with SCID are 1 in 100,000 chance...... As you all can imagine, Lonnie’s father and I were shocked, confused, terrified.. Neither of us had ever known anyone in our families to have it, in fact we didn’t even know what SCID was... The only cure to this disease is a bone marrow transfusion. Once that is done, he will have to be hospitalized for a few months, then he will be restricted for the first few years of his life. After that, he will be a healthy normal baby! Yet, as a brand new Mom and only 24, I didn’t prepare myself for this. How could anyone prepare for this? You gather the things you need such as diapers, bottles, blankets, a crib and so much more. You set up the nursery so that it’s cute as can be, and you plan all the perfect fun things you will do with your new baby. But I‎t doesn’t ever cross your mind that something like this could happen. Baby Lonnie’s father and I have to travel back and forth from our home in Federal Way to Children’s hospital in Seattle multiple times a week for his doctor appointments and check ups so we can prepare for his chemotherapy and bone marrow transfusion hopefully by February. Until then, my baby needs his mom with him 24/7 as he is taking several medications a day along with specific instructions on how to live our daily lives in order to keep him healthy.... Through this experience I have felt very thankful to live in Washington - one of the few states in The U.S. to offer the newborn screening to every baby. If I‎t wasn’t for the newborn screening I️ would not be able to share our journey through SCID. SCID is fatal, and undetectable to the naked eye. In the past, before hospitals starting preforming this newborn screening, SCID was only diagnosed when it was already too late.... As a result Lonnie and I really want to raise awareness on how important this newborn screening is and we pray to see the day where all states in the U.S. make it a requirement! We also really encourage our friends and family to donate to any blood bank because you truly could save somebodies life... Out of 13 million donors in the world my little Lonnie had not 1 match... luckily our transplant and immunology team have decided after multiple tests and preparation, I, his mother, will be his donor.


Due to my sweet baby Lonnie’s condition it requires me to stay with him 24/7 in the house away from the world full of germs, meaning I cannot go back to work, in other words I have no way of making income.... So I come here with my pride put aside for the love of my new born son.. I‎t will help us stay on a positive path to health and security for our angel! We’re so appreciative and so is our sweet baby boy!! ❤️

CaringBridge is a nonprofit social network dedicated to helping family and friends communicate with and support loved ones during a health journey. Learn more about CaringBridge.

To interact with Lonnie’s website, sign in or register today.

By registering with CaringBridge, you will join over 300,000 people a day who are supporting friends and family members.

Sign In Or Register