Hope For Baby Charlie

Dear Friends,

I am reaching out to loving colleagues of Cody Williamson and other caring individuals who are willing and able to help out my friend and co-worker Cody Williamson. Cody is a Registered Nurse that works with me at Baylor All Saints Medical Center in Fort Worth and serves as a Circulator on our Heart Team.

On 10/25 Cody’s son, Charlie was born with a congenital heart defect (ventricular septal defect), DiGeorge Syndrome, and a bowel obstruction that required immediate surgery. During the surgery the surgeon found severe malrotation of the bowel with volvulus and 95% of Charlie’s small bowel had to be removed, which resulted in Charlie having ultra-short bowel syndrome. While Charlie is able to get some nutrition of breast milk through his G-button, the majority of his nutrition is TPN and lipids going through his central line.

This past Friday Fort Worth experienced a severe storm and the power was knocked out at Cody’s house for over 38 hours. Since the TPN is required to be in a refrigerator, it expired before they were able to save it. Their infusion pharmacy had to mix more and have it delivered via a courier that was delayed. In addition, Charlie’s supply of breast milk in a deep freezer was placed at risk of expiring. Cody’s father and grandfather were able to help him move it to Cody’s parent’s house that still had power, but this was a less than ideal solution. Charlie’s doctors in Boston have stressed that the breastmilk that is continuously running through his G-button is a major reason why he has been doing so well and why his weight gain continues to climb. It is also vital for his remaining small intestine to continue to grow and adapt. Charlie and the rest of his equipment was moved to Cody’s in-law’s an hour away. With that being said, and the unique risk of severe weather combined with winter weather in the DFW area that both affect power supply, it would be amazing for Cody and his family to have access to an emergency generator to use in power outages to keep Charlie’s severely needed supplies available without compromising them and without having to split up the family to various locations.

In addition to the generator expense, Cody and his wife (Kaity) take Charlie to Boston, Massachusetts every 4 months to see a specialty team of providers. In light of the severe nature of Charlie’s conditions, Cody and Kaity did some research on where the best care is offered for short bowel patients. They found that Boston Children’s Hospital was ranked as #1 in the United States for pediatric short bowel syndrome. Their medical staff is also linked with Harvard Medical School and Boston Children’s, in conjunction with Harvard, operate what is known as the Center for Advanced Intestinal Rehabilitation (CAIR). This center’s goal is to provide the best treatment for short bowel syndrome patients and hopefully avoid a small bowel and liver transplant. Avoiding a transplant is ideal because the outcomes are less than ideal. Charlie’s doctors at Boston Children’s are some of the primary experts in the world on his condition and many of the surgeons have procedures related to short bowel syndrome named after them. It is the leading edge on short bowel syndrome treatment. To be their patient, Charlie is required to be seen frequently, with every other visit virtually as long as he is stable. Cody and Kaity are required to physically bring him to Boston, MA for every other appointment to continue under their care. They are thankful to be able to bring him to the best place in the world for him, however expensive and difficult it may be.

Between Charlie’s significant small intestine loss, his heart defect and his DiGeorge syndrome, his medical expenses have quickly become astronomical. While Cody and Kaity are working with case workers and social workers, the world of financial assistance is murky and slow, and any programs that they may qualify for have exceedingly long wait times (15-year waitlist for one program).

Cody and Kaity would be grateful for any small amount you may be able to support them with to help pay for:

1 -A generator to be installed at their home so that Charlie’s TPN and breast milk can be refrigerated and/or frozen at all times (when power outages occur).

2 – Funds to assist in paying for their trips back and forth to Boston Massachusetts for Charlie’s short bowel syndrome treatments.

3 - Prayers for little Charlie. They believe in the triune God of the Bible, who is the author and creator of the universe. They believe that Charlie is still alive because God has a plan for his life, and they are here to see that plan through.

Thank you so much for your time in reading his story and thank you for your love and support in helping Cody’s family!!!!

-Melissa Struikmans