Connor the Courageous

 

After 42 days in the NICU and his first heart surgery, we were excited to bring Connor home! 

But his first year “at home” was a difficult one. Before turning 1, Connor had been admitted to the ICU for numerous illnesses, such as RSV, meningitis, pneumonia, sepsis, and had his second heart surgery. For reasons unknown, his immune system has always been weak, making him more vulnerable to infections that are common in children his age but rarely lead to serious illness in otherwise healthy kids. Sadly, meningitis caused permanent brain injuries that have left Connor severely intellectually disabled. He suddenly stopped reaching developmental milestones and regressed in many ways. Although he receives intensive therapies, only time will tell the extent of damage done, but we hope every day to see that bright light in Connor’s face again!

Connor’s heart defects, which can never be cured short of a heart transplant, could be lessened with a series of risky surgeries, but his medical team couldn’t agree on the how, when, and where. Due to the complexity of Connor’s case, we could only find one hospital in the entire country who was willing to take over his care: Texas Children’s Hospital in Houston, TX, which is ranked #1 in the nation for pediatric cardiology. His local team agreed that Connor needed “the experts” to best determine what was next on his journey, so we transferred his heart care to Texas Children’s.

 

 

In the meantime, Connor lives a very busy but cautious life. He is in therapy nearly 40 hours per week, working hard to one day speak, walk, eat, and play like other children his age. He also sees 9 medical specialists in 3 different states, so travel has become a way of life for us! Based on his decreased heart function and continued illnesses, Texas Children’s thinks it’s time to move ahead with his third open heart surgery. On one hand, we’re terrified because this surgery, the Fontan procedure, is The Big One in the heart community, has a high rate of complications, and can’t truly fix Connor’s heart defects. On the other hand, we’re grateful that the #1 team in country is even willing to perform this surgery for Connor when others said it was beyond their abilities. If successful, this third surgery would improve Connor’s heart function and give him a chance at a more “normal” life, at least for the next few years. We find joy in that possibility!

 

Although we have gladly turned our lives upside down for Connor the Courageous, his medical and travel expenses have taken a toll on our family over the years. Like so many other families, this year has been even  harder for us financially, and the thought of spending weeks out of state while losing income from work adds more stress to an already difficult time. Many of the support options for families traveling for medical care aren’t available because of Covid-19 restrictions or their funds have already been exhausted. 

 

We are so grateful to be able to move forward with Connor's treatment, but as mentioned before financial help/relief aren't really options we have available to us at this time. Connor will have to travel 3 states away just for consultation, and then back again for surgery. Your gift will help us cover medical expenses, travel/lodging/food costs, and lost income due to missed work. During this time we will also have to provide childcare for Connor's two older brothers!

We ask humbly that you consider helping us get Connor the Courageous the medical care he needs. His special gift is bringing out the best in everyone around him, and he has shown us many times that there’s almost always a miracle waiting in the wings. Thank you for reading his story.