Evan Wright Care Assistance Fund

My name is Steve Kuypers. I am a parent of WW Lewis students and a proud member of the Sulphur, La community.

As a community, I’m asking that you all pray for and consider a financial contribution to this young family. The Wrights are an active part of our community. The expenses coming their way are overwhelming. Our goal is to try to raise $25,000 by Feb 15, 2023. These funds will offer some relief through this family’s stressful days ahead.

Reports from Evan’s Carebridge journal state, “Evan has been diagnosed with Perinatal HPP (Hypophosphatasia). This affects his bone growth and strength. We’ve already started him on Strensiq (which is the only treatment available for HPP). Strensiq replaces the enzyme that Evan is lacking to create healthy bones. It’s a newer drug that has really good success rates.

Today we met with the team that has been caring for Evan (the neonatologist, geneticist, endocrinologist & the ENT who will be placing Evan’s trach.) The feedback we got today is that the only reason Evan is still hospitalized is because he is ventilator dependent. Evan’s team will start planning the trach placement and we will be receiving a lot of education on how to care for him and his trach. Evan won’t be able to eat anything by mouth so he will also have a g-tube where he will get all of his feedings. We are anticipating he’ll be in the hospital for 6-8 weeks to do the trach, g tube, and all of our training. After that he will get to go home and will be set up with home health. We will follow up with the outpatient Bone Clinic here at Texas Children’s every 2 to 3 months to monitor his progress. We will need to find a local pediatrician that is comfortable with Evan’s situation even though they won’t be dictating much of his care. We asked a lot of questions. Some of those can’t be answered at this point because his condition is so rare and this drug is new and they don’t have long term studies. The doctors expect he will do well on the medication. There is a possibility he won’t need the trach and g tube forever. We are told he will be able to walk one day if his bones become strong enough to support him. If that doesn’t happen then he will use a wheelchair. Right now it’s too early to tell exactly which situation is more likely. Neurologically Evan seems fine. They will keep an eye on his B6 levels (a B6 imbalance can cause seizures which could cause neurological deficits). Their best guess is that Evan will be short in stature, likely close to what we see with dwarfism.”