Help with Vance’s back surgery.

As most of you know, Vance has severe scoliosis with an 85° curvature. It was at an 83° curvature a year ago, and a 60° curvature the year before that.

The photo included in the top banner shows the 85° curvature.

Vance recently underwent genetic testing and I learned that he has the genetic marker for Noonan Syndrome. This answers a lot of questions. It explains that most of Vance’s challenges aren’t coincidental.

Issues Vance experiences associated with Noonan Syndrome:

- Scoliosis

- Intellectual differences such as Autism

- Apraxia of speech

- Feeding and swallowing difficulties

- Small stature - including low muscle tone (hypotonia)

- Concave chest

We have a long road ahead of us.

The severity of Vance’s spine curvature will require multiple surgeries. These surgeries are essential to his well being and functioning. We’ve exhausted all of the non invasive options. Without corrective measures, his scoliosis could potentially threaten the space for his heart and lungs.

The next step is a traction halo. This surgery is scheduled for July 5, 2023. During this surgery they’ll drill holes in the sides of Vance’s skull to attach pins to his skull.

The pins hold a metal halo, which he’ll be suspended from 3 times a day for the next 2 months. The purpose of this is to use gravity to lessen the degree of the curvature.

After this surgery, we’ll need to remain at the hospital to allow time for him to recover from the surgery, adjust to the pins in his skull and to give me time to learn how to operate the equipment for use at home. I was told this may take a few weeks.

As most of you know, I am a Parent CNA, meaning I get paid by Medicaid for managing Vance’s care. This is my full time job and sole source of income. While he is in the hospital, I will be there, but will not get paid because he’s documented as being in their care.

I’m asking for donations to help cover the costs of our living expenses during this time, including food, gas, rent and bills. (During this time, I won’t have cooking or kitchen access.)

My biggest concern right now is finances. I am deeply concerned about how I’m going to make this work financially, while also being there for Vance.

Moving forward, my long term plan is to enroll in a one year Master’s Degree program to earn an MBA in healthcare management. I was hoping to enroll in the MBA program this fall, but with Vance getting older and his scoliosis getting more severe, I am holding off on enrolling in school until his doctor and I have a more definitive plan for addressing his scoliosis. This surgery is the first step in that process.

Thank you for taking the time to read this. We ask for your prayers as we continue forward. And, if you feel called to, please consider donating. Every little bit helps and is most appreciated.