Support for Sawyer's Long Term Medical Care

 

 

November 23, 2021

 

I would like to begin with a sincere apology to Sawyer's family for it has taken me over a full week to write this.  I thought I was suffering from writer's block, when truly the delay was caused from not wanting to connect with my own emotions surrounding Sawyer's ongoing ordeal. Sawyer lives in Hinesburg, Vermont. Her grandparents are two of my dearest friends, and my bond with Sawyer's mommy, Dawn, is akin to a sister. I do not have personal access to any funds received. The family will independently create a link with Gofundme's financial office for receipt. They are the only benefactors. Sawyer's family has shared the following medical information:

 

Sawyer was diagnosed in utero with Congenital Scoliosis. When she was born, her curve was 47 degrees. By the age of two, she was closely followed by her spine team at University of Vermont Medical Center (UVMMC). Every 3 months she would go for an x ray to see if the curve was progressing. Right around two years old, Sawyer’s curve had increased to 55 degrees. At this time the medical team believed Sawyer was going to need spinal surgery to correct the scoliosis, but first they would need to do open heart surgery to correct a condition called Scimitar Syndrome. This procedure would mean rerouting a vein from the top left of her heart to the right side to allow for proper blood flow.

 

In 2016, Sawyer had her first surgery of open heart surgery at Boston Children’s Hospital. Prior to the heart surgery, she received four coils to clamp off pulmonary sequestrations (in her lungs). Due to the scoliosis, her heart has been pushed to the center of her chest, and her left lung is larger than the right lung. The right lung has only two-thirds living tissue and the bottom third is dead tissue. Looking at Sawyer, you would never know she has all that going on inside.

 

After the heart surgery in 2016, Sawyer’s spine stopped curving for the next 4 years. In February of this year, 2021, Sawyer went in for a routine spine appointment. Her parents received the devastating news that her curve had increased to 59 degrees. At this time, her spine team at UVM decided it would be best to start the correction of her scoliosis. The family immediately began the arduous journey of countless doctors appointments, diagnostics and testing at both UVMCC and Boston's Children's Hospital. This is where I began to notice the beginning signs of emotional turmoil, exhaustion and compassion fatigue within the family. I reached out in June, asking if they would consider allowing me to write a Gofundme on their behalf.  They respectfully declined.

 

On August 3rd, Sawyer had her first scoliosis surgery in Boston. A VEPTR Rod was implanted and attached to her ribs and to her spine. In addition to the rod implant, the medical team needed to saw apart one set of fused ribs (she has four sets fused in total) to allow for continuous lung growth. This surgery was the first of 17 surgeries to come.

 

Sawyer’s second surgery - to begin the process of lengthening the rod - just happened on November 12th. It was after their return home from this surgery that the family finally agree that maybe, just maybe, a little bit of help from the community may be warranted. The operative schedule moving forward is one surgery, every six months, for the next eight years. Each spring and fall, for the next eight years, Sawyer's family will need to travel to Boston, obtain short term housing, each parent will take leave of their job, while trying to live a semblance of ordinary life in between.

 

Sawyer has limiting restrictions for the next eight years due to the VEPTR rod. Those restrictions include: no trampolines, sports, contact play where she could fall or break the rod, horse back riding, monkey bars, gymnastics, climbing walls and more. Everything that makes a childhood grand.

 

Any funds raised will be used for food, lodging, travel expenses, care for younger brother and any special needs items such as medications, wedge pillows, rolling back packs, throughout her scoliosis surgery journey.

 

I have created a goal of $3,000. They deserve far more than that but feel its a reasonable place to start.

 

On behalf of Sawyer and her incredible family, thank you!

 

Respectfully,

April Pillsbury