THIS IS THEIR STORY...
Early Life: Jonathan has severe Hemophilia A. He was born in 1978 during a scary time for the hemophilia community. Treatment was difficult and became dangerous when the blood supply for hemophiliacs, became tainted with many diseases including HIV and hepatitis. An enormous number of patients contracted these diseases and an alarming number of them died. Those who survived were left to continue facing hemophilia, now coupled with many other sicknesses. Jonathan was one of only a few who made it through that time period unscathed.
Like other severe hemophiliacs, Jonathan’s life has been filled with bleeding target joints, bone deterioration, the near complete loss of his right arm and elbow at age 14 (which was saved through an experimental surgery), severe ankle bleeds and multiple surgeries. He has been in and out of wheelchairs, on and off of crutches and has used canes. He was in an out of school as a kid because of bleeds and knew the struggles of having to make choices that “normal” kids don’t face; like how bad it would cause him to bleed if he played on the playground, ran or threw a football. And yet, he maintained a contagious laugh and a spirit of courage. Despite his suffering, he never complained.
Jonathan’s parents also knew the effects of hemophilia and the cost of making sure their son had treatment to keep him alive. In order to qualify for a program helping Jonathan get his factor in their state, they were forced to reduce their income. A couple desperately in love and college sweethearts, they were told to “divorce in order to reflect a lower income” if they wanted their son to continue receiving treatments from the state. Determined not to make such a choice, Jonathan’s dad and a longtime entrepreneur, began to sell off his rental properties instead. Their trust in God had carried them through all of the struggles, pain, and trials they had walked through with Jonathan. They knew the Lord would continue to be faithful. They eventually packed up and moved to a state where they knew no one in order get more affordable help and treatment. The lengths that parents will go, to care for their children with hemophilia are incalculable.
Personal Life: Jonathan has been through much, but he has also lived through great victories. He met the love of his life, Carla while attending college. The day Jonathan proposed he said, “I couldn’t imagine bringing someone into a life of hemophilia”. Carla quickly responded with the strength of anyone who marries a hemophiliac, “Hemophilia doesn’t define you. Whoever you marry will have to decide in their own heart if they are willing to walk through life with ALL of you. You will be an amazing husband despite hemophilia”. She had no idea of his intent to propose. They have been happily married for 12 years.
Jonathan and Carla have four beautiful, miraculous children. After the loss of their first baby and a placenta rupture, which nearly cost the life of their second, Carla had a uterine abscess. It destroyed one of her ovaries and severely damaged the other. They were told she would never be able to conceive again. By the grace of God, through much prayer and to the amazement of the medical community, they had three additional children.
Season of Crisis and How HOPE Began: Now a father, husband, successful financial advisor and the sole provider for his family, Jonathan faced a season of crisis like none he had faced before. Jonathan’s worst fear that he would be unable to provide for his family came at him quickly in January of 2009. He, like many patients, had pushed off multiple surgeries, while trying to live life to the fullest and while taking care of his family. It was beginning to catch up with him. He was admitted to the hospital. When it became clear that Jonathan’s health was not improving, he went on medical leave and was unable to continue building his business. He was back in a wheelchair fighting for his health. Jonathan had surgery on his heal and had several elbow surgeries including a complete elbow replacement. Carla was pregnant with their fourth child and having a similarly difficult pregnancy to her others. She sought help from a few organizations outside of the hemophilia community who denied assistance. Their faith, trust, and security were being confronted. How would they survive?
This answer came in the form of completely selfless acts of kindness. Family, friends, their church, and complete strangers came to their aid. People began bringing meals to their home, cleaning their house, caring for their children and helping to pay their bills. Some guys donated a van for a necessary wheelchair lift and others raised money to purchase the lift. Someone donated concrete and lumber and built a wheelchair ramp onto their house. Others held a benefit concert in their honor. This was a community effort built on friendship and compassion!
During this time, a close friend of Jonathan suggested starting a foundation in Jonathan’s honor. Jonathan knew immediately what it should be called. It had been in him and his wife’s heart for years to help carry families in the hemophilia community on a journey of hope. Hope for a brighter future. Hope that the pain would pass. Hope that they were going to make it. Hope that they were not alone….. And Hope for Hemophilia was born.
Enough money was raised to help Jonathan and Carla get through the months that followed. Slowly, Jonathan was able to return to work and life with hemophilia began to return to “normal”. Had it not been for the incredible generosity of others, this family could not have survived such a difficult season. It became so clear: this was a mission they needed to carry on for other families in crisis.
Jonathan and Carla have continued the mission of Hope for Hemophilia. Their heart is to pay forward the friendship and kindness they have so graciously been given. They work hard to see patients all over the country know they are not alone!
Jonathan now serves as the Executive Director along with 10 additional board members made up of professionals and community leaders. They understand these seasons of crisis and are committed to helping others through them.