Lewis Family Medical Travel

It’s Super Bowl Sunday: our family is over at the Lewis household, and we are surrounded by the sound of small feet pitter pattering across the floors, sweet squeals and laughter, tiny bodies twirling to “Let it Go,” and little legs bouncing on the bounce house. It’s a night full of pure simple joy: a precious yet ordinary night for anybody with children—for friends gathering together. The Lewis family, however, views these moments of “togetherness”through a different lens, recognizing how quickly they can change.

Our friends, Amanda and Rob, recently have been challenged to bravely, fiercely, and relentlessly advocate for their girls in two separate medically complex journeys. To witness their journey is to see a true testament of their faith and of their incredible love for all their children and each other—spending many nights split between the hospital and the other children/spouse at home, having to navigate the challenges of missed work, watching their girls each forced to endure medical tests and treatments that many will never have to in their entire lifetimes, and seeking second, third, fourth, and other opinions when necessary. Despite how well they carry this heavy weight, this does come with many costs; if we can help alleviate the financial burden, this is one less stressor for this family to manage during an already overwhelmingly stressful time.

The next step in the Lewis family journey will take them to Texas (an expected one week stay) for further evaluation for Clara; a team who specializes in diagnoses consistent with Clara’s presentation will complete further testing, which can provide answers for the most successful treatment plan. Our hope for the Lewis family is that this plan will not only protect Clara’s physical safety but that it also will reduce future medical expenses, potential hospitalizations, and time away from one another.

If you feel moved to contribute, please use the link to donate directly to the Lewis family. Below is Rob and Amanda’s personal recount of their journey:

Over the last 20months our family has developed an incredible testimony. We haven’t been completely forthcoming with details as it has been very overwhelming and we have been in “survival” mode. After another hospital stay with Imani this week we watched so many of our friends and our church community step in to help. We have been encouraged to share our story in hopes that it gives another family some peace and encouragement.

At 6 weeks old, we started CPR at home on Imani and quickly realized there was a bigger concern than “reflux”. She had surgery to fix some extra tissue in her airway, but her breathing spasms and apnea continued. Imani continued to have several hospital stays without clear answers. The lack of answers motivated Amanda to search through medical literature. Amanda came across an article about a very rare genetic mutation in the sodium channel; a neuromuscular condition: it fit every single one of her symptoms. Amanda sent this to Imani’s medical team, who then sent out the genetic testing, which finally led to an answer in March 2023. Her genetic test showed a mutation in the exact sodium channel Amanda had found in the case study. Imani’s treatment for this involves a lot of medication (8 total), which also cause significant side effects. The medications are life saving and help her symptoms, but they do not “fix” her condition and may be causing liver damage (controlled by another medication) and reducing her bone marrow response and immune system. What this looks like for our family: several ED visits, weekly Physical Therapy  and Occupational Therapy appointments , 8 specialists, a pulse oximeter when napping/sleeping, in-home oxygen, rescue oxygen, an emergency bag, 7 hospital stays, and countless sleepless nights over the last 20 months. Since Imani was adopted, she was placed on Medicaid through the State of NC. It was renewed automatically by the state in 2023. This has helped covered a lot of her formal medical expenses and medications. However, we are not confident Imani will be able to keep her Medicaid when it’s up for renewal in April of 2024.

In January of 2024, Clara was hospitalized with very low blood sugars that made her body really sick. We started monitoring her blood sugars at home and realized there was a bigger problem. Clara has a really hard time regulating her blood sugar (high and low levels). To monitor this issue, Clara is wearing a Continuous Glucose Monitor that helps us know if her blood sugar is going too high or dangerously low. We are working through understanding this issue with metabolic genetics and a specialist in Texas. Clara is currently taking cornstarch (a very long acting carb) to keep her blood sugar levels a little more steady. She is on a very strict diet of low sugar and high protein. Through Amanda’s colleagues, we were connected to a specialist in Texas and will be traveling there for a week long hospital stay for further testing (in a couple weeks). The medical and travel costs associated with this trip will cost thousands of dollars.

Some dear friends from our church setup a meal train for our family. If you would like to help in this way, here is the link:

https://mealtrain.com/mo8q37

Another close friend setup a GoFundMe page to help with the expense of traveling and hospital expenses in Texas at Cook Children’s hospital. If you feel led to contribute, here is the link:

Our close friends often ask us how we are doing all of this and “surviving” through it all. The truth is that this season of life has tested our faith in ways we never expected, and in response allowed it to grow. We take everything day by day and feel at peace knowing that our faith is guiding this season of life for our family. Praying alongside us means the world to us right now. Here is a Bible verse that we have found hope and encouragement in:

“Seek first his kingdom and his righteousness, and all these things will be given to you as well. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.” Matthew 6:33-34