Bennett's Story

To look at Bennett was to see a happy, vibrant boy whose belly laugh was bold, strong, and full of life. Bennett loved to be outdoors swinging, playing in the sandbox, driving his Cozy Coupe, riding in the wagon pulled by any willing friend or family member, or keeping an eye out the car window for the busy construction vehicles. In his opinion, chips and queso, biscuits and gravy, and McDonald’s egg and cheese biscuit are good to consume at any hour of the day! All of this was completely different to the crazy disease silently wreaking havoc on the inside of his body.

Bennett was almost 9 months old when he was diagnosed with Pearson’s Syndrome. an extremely rare mitochondrial disease that presently affects fewer than 100 children worldwide. The disease causes bone marrow failure meaning all three types of blood cells (red, white, and platelets) are not being produced sufficiently. Also it affects other organs like the pancreas, which then requires supplements and careful monitoring. Other kids have had problems with their heart, lungs, eyes, ears, kidneys, and the brain. Bennett’s symptoms presented a few months earlier when it was discovered he had a very low amount of oxygen-carrying hemoglobin in his blood and was on the verges of a heart attack or stroke. For over 2 years he received life-saving blood transfusions twice a month to keep him stabilized.

When he was 2 ½ years old he was given a secondary diagnosis of AML caused by monosomy 7, a type of pre-leukemia, caused by the long-term requirement of a medicine to stimulate his bone marrow to make infection-fighting cells. The decision was made to undergo a bone marrow transplant in order to prevent the progression to cancer. However, due to his inability to fight disease, Bennett’s transplant had to be postponed because a seemingly simple scratch on his foot turned in to a fungal infection that spread to the bone. A person with a healthy immune system would have probably been able to fight the infection without a problem. However, Bennett ultimately had to have his foot amputated in order to be rid of the infection and proceed with the bone marrow transplant.

After moving through chemo and transplant with “flying colors”, he battled graft vs. host disease as his body worked overtime to accept the new, life-changing cells. Episodes of dehydration, a stomach bug, and a cold required Bennett’s recovering immune system fight even harder. During these times and throughout his short life, the effects of Pearson Syndrome were relentless, requiring his medical team to continuously juggle treatment options to keep his body stabilized. In June 2015, amidst complications including kidney dysfunction and pneumonia, Bennett’s brave fight against Pearson Syndrome ended.

Love Like Crazy Foundation was started in honor of Bennett with a threefold goal of paying forward to try to pay back all of the kindness and love people showed to us, especially when Bennett was in the hospital.