Jacob Smith was born June 8, 1999 – it was a special day because he was born on his dad’s birthday.  He was sick as a baby and had a lot of mucus and cold symptoms; he was small and didn’t gain that much weight.  When he was 18 months old, he was diagnosed with Cystic Fibrosis.  This came as a large shock to our family because we had no idea that was even a possibility and to our knowledge we knew of no one in our family with the recessive gene. Both of Jacob’s parents carried the cystic fibrosis gene and he has two different types of mutations, the Delta F508 and the N1303k gene. Cystic fibrosis is a genetic disease, meaning it is passed down through the parents. When a baby is born with cystic fibrosis, they have inherited two cystic fibrosis genes, one from the mother and one from the father. A person with only one cystic fibrosis gene is healthy and said to be a “carrier” of the disease. If both parents carry the cystic fibrosis gene, they each have one copy of the defective gene, but do not have the disease themselves. Their children have a:

• 25 percent chance of inheriting both defective copies and having cystic fibrosis
• 50 percent chance of inheriting one defective copy and being a carrier
• 25 percent chance of not having cystic fibrosis and not carrying the gene

Life was not easy for Jacob to carry that large of a burden at such a young age. He was not able to be as active as kids his age. He had to take medicine several times a day and had to be extremely careful not to get exposed to typical colds and flu. He had many doctor appointments with the cystic fibrosis hospital. 

Jacob spent many hours playing video games which he really enjoyed but he sacrificed socialization with his peers.

As Jacob grew, he started having more infections that would require him to spend time in the hospital to get iv antibiotic treatments and some infections were resistant to the drugs.

Jacob’s dad (James) was in the military and just recently retired with 32 years of service. The family had to move every three years. The big consideration was: is there a Cystic Fibrosis hospital nearby?

Jacob always wanted to be like his dad and join the military, but that dream would never happen. As he reached adulthood, he tried to figure out what occupation he could do. He went to school and became an EMT (Emergency Medical Technician); he wanted to be of service to others who needed help. He also was a volunteer firefighter. He wanted to pay it forward considering all the help he received at different times in his life.

In October of this year Jacob was found unresponsive. He was transferred to the hospital. It was what every CF patient fears – his lungs were not working and he had a massive infection. He was placed in a medically induced coma and the doctors began trying to save his life.

His journey has been very difficult. Jacob was placed on an ECMO machine. ECMO (extracorporeal membrane oxygenation) is a type of artificial life support that can help a person whose lungs and heart aren’t functioning correctly. ECMO continuously pumps blood out of your body and then sends it through devices that add oxygen and remove carbon dioxide. ECMO is not a cure or an intervention; it is only for support or a bridge until an organ transplant can be performed.

After trying to get the lung infections under control, the doctors determined that the only option to survive was an organ transplant – not only were his lungs not working, neither was his liver. In order to survive he needed to be evaluated to see if he would be a candidate for a double lung and liver transplant. He was recently flown to Northwestern Memorial Hospital in Chicago and accepted into  their organ transplant program. The hospital has had a huge success rate with transplants and they are top notch. We are so grateful that he is going to receive the best care possible in an impossible situation.

As we wait for organs, we are also grateful to a grieving family who will be donating the organs of their loved one. Because of their sacrifice, another loved one will have a chance at a new beginning.

Jacob’s dad has power of attorney for his medical decisions, but he resides in South Carolina. In order for Jacob to get the life-saving transplant he needs, the hospital transplant program requires  Jacob’s dad to commit to living in Chicago for approximately one year as his caregiver – before, during, and after the transplant for any medical treatment or problems that might arise from the transplant. As you might imagine this is going to be life changing in many ways – especially regarding financial obligations. We don’t have a large family or support system as most of us live in California. Jacob’s dad is not financially able to cover his obligations in South Carolina and living expenses in Chicago at the same time. We were fortunate to learn of the Children’s Organ Transplant Association. COTA can help remove the financial barriers to a life-saving transplant by providing fundraising assistance and family support. Any donations made to COTA will strictly be designated in honor of Jacob’s fight and your donation is tax deductible to the fullest extent of the law. We are thankful for any donations sent to COTA in Jacob’s honor and we are blessed by your love, support, and kindness in giving the gift of life thru your donations.

Thank You for reading Jacob’s story. We ask that you share this story with your friends and others to make them aware of organ transplants and how financial donations to COTA can help save lives and make it just a little bit easier on transplant families at this most difficult and stressful time of their lives.

James – Dad

Jacob – Son and organ recipient     

Anne – Paternal grandma and storyteller

The Children’s Organ Transplant Association (COTA) helps children who need a life-saving transplant by providing fundraising assistance and family support. COTA also works with individuals of any age with a single-gene disorder such as Polycystic Kidney Disease, Cystic Fibrosis or Sickle Cell Disease. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy families. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free of charge and gifts to COTA are tax deductible to the fullest extent of the law.