Wesley Pettit Family and Caregiver Support Donor Advised Fund

It was noon, May 19, 1999, a newborn baby’s cry. A beautiful gift from God entered this world; a perfect, full-term baby boy, born without complications, and an Apgar score of 10. Wesley John Pettit, a perfectly healthy baby it seemed.

We soon realized that something wasn’t right with our baby’s development. Wesley was very fussy when he nursed and he did not appear to be gaining weight as a newborn should. At 2 months he weighed 9 lbs 8 oz. and by 3 months he only weighed 9 lbs. Something WAS wrong. He was hospitalized for “Failure to Thrive”, a diagnosis that only indicates a lack of growth and progress, but gives no reasons why. A series of adjustments followed; starting with the way we fed Wesley, utilizing special bottle nipples and techniques, yet still used pumped breast milk knowing all the benefits it provided our struggling little boy.

And so, the tests began: blood, urine, spinal fluid, genetic testing, scans, x-rays, all leading to more questions and seemingly less answers. Many things were ruled out, but we still had no clear direction or solution to his unique struggles. Just before Wesley’s first birthday, he had a muscle biopsy. Again, many more things were ruled out, but there were indications of a possible mitochondrial disorder. Mitochondrial disorders, simply put, inhibit the energy processing inside the body’s cells. At that point, the main concern was Wesley’s hypotonia, or low muscle tone, as he was very weak. He was never able to crawl, stand, or walk on his own.

Unfortunately, at 16 months of age, seizures began. More tests, but of a different genre including EEGs, MRIs, and so on, continuing our search for answers. We traveled to Cleveland Clinic, Mayo Clinic, Detroit Children’s Hospital, amongst others, consulting a variety of specialists without any real solutions. Wesley received services from the Early On program until he was 3, gradually increasing his many therapy appointments (PT, OT, and speech). He began school when he was 3 at what is now Hillside in Allegan, helping him to receive daily specialized therapies and schooling. Due to his tendency to become dehydrated along with difficulty in eating and swallowing, Wesley had a feeding tube placed at the age of 9 to supplement his oral feedings. At the age of 10, his scoliosis was so severe that he underwent scoliosis surgery and spinal fusion to avoid further compression of internal organs. He had a VNS (Vagal Nerve Stimulation) device placed to assist in seizure control when he was 14, approximately when he was switched to being exclusively tube fed due to the numerous hospitalizations due to aspiration pneumonia. Just in the past couple months Wesley underwent 2 surgeries for DBS (Deep Brain Stimulation), again in an attempt to improve seizure control.

Wesley’s seizure disorder and compromised lung function continue to be the most frequent threat to his health. Still today we are without many answers, yet Wesley is a very handsome, 23-year-old young man. Although he is non-verbal and wheelchair bound, Wesley is a very happy, social, and dearly loved individual.

Wesley has had numerous hospital stays due to surgeries, illnesses, and status epilepticus. There have been MANY fabulous facilities and staff that have aided in his care. There have been times that we as a family struggled financially due to the hospitalizations, time off work, traveling to other medical facilities, etc. The entire family has participated in his care, including his older brother and three younger siblings, and all support and share in his journey. There are things that we must do for Wesley that we never thought would be necessary and many we had to learn in order to give him the care he needs and deserves. Family, friends, and insurance have been vital, and for which we grateful.

There are times where just a little extra assistance makes the journey less challenging. This is why The Wesley Pettit - Family & Caregiver Support Donor-Advised Fund has three main objectives:

• Support the care and healing of special needs children with items or services outside the normal coverage of insurance or medical treatments.
• Support the family unit of those caring for these special children, reducing unnecessary stress whenever possible.
• Support the medical professionals and specialists responsible for the medical treatment of special needs children.

Every donation toward The Wesley Pettit - Family & Caregiver Support Donor-Advised Fund at Bronson Health Foundation is designated toward a project or initiative that supports one of these objectives. We want to use our resources of time, experience, and monetary donations to better the lives of those with children that require specialized care here in our community; and we hope that the sharing of Wesley’s story, and your support helps others with similar journeys.