Accepting memorial contributions.
Our families introduce you to Marcus James Tolbert, born March 27, 2011.
At months of age Marcus struggled to breathe. Marcus was continuously hospitalized at St. Paul Children's Hospital and was treated for an Interstitial Lung Disease. This disease caused cyst like growths and permanent scarring on the lungs. The scarring caused stiffness in the lungs making it hard to breathe and exhale properly. At that time no diagnosis could be made with a lot of questions in the air. With this being said, Marcus was sent home time and time again with oxygen. We had endured many ups and downs through these first few years and Children's Hospital became family to us.
In July of 2016 at 5 years of age, Marcus went into Respiratory Failure and was admitted back to Children's Hospital. He was intubated and spent 4 weeks in the PICU recovering from this failure. This eventually led to his first clear diagnosis, which was determined to be a Surfactant C Deficiency (A very rare, chronic interstitial lung disease, with no cure). Surfactant essentially acts as a detergent, reducing surface tension, keeping our lungs moist and pliable. Marcus makes none. The "transplant" talk started at this time, but goal was to hold this off as long as possible.
After this trip home, Marcus was put on heavy steroids, high flow during the day and by-pap at night. With this new regiment put into place, Marcus grew to be the strongest we have ever seen him! These last 3 years he has lived a life as normal as possible playing shiny hockey, basketball, baseball, football, gaming, going to music concerts & sporting events, school, playing with his sister and friends, just all around being an average 6-8 year old boy. For those who know Marcus, once you meet him, you will never forget his spunk and drive for living life to the fullest!
Fast forward to July 11, 2019. Marcus woke up in severe condition struggling to breathe. He was immediately rushed to the E.R. Once he arrived he was receiving only 5% of his normal O2 requirements. Marcus was revived, intubated and transferred to St. Paul Children's Hospital where he had spent 2 weeks in the PICU again. During this time he had a few more complications with the right lung continuing to collapse and the doctors had decided to place a chest tube to prevent any further collapsing of the lung. During this stay, Marcus's pulmonary team had made the decision that now was time to medically transport Marcus to Houston Children's Hospital via air travel to be evaluated for a dual lung transplant.
Our families since have relocated to Houston, Texas, and are awaiting approval to be placed on the organ transplant list. It will be a long road and journey ahead but we will do whatever has to be done to give our boy the very best quality of life possible!
The Children's Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.