One year old Evan Brenneman will have to live with hunger his entire life.
Not because he’s homeless or poor, but because Evan was born with Prader-Willi syndrome (PWS).
This genetic disorder leads to chronic hunger which in turn, leads to obesity and type 2 diabetes. Other symptoms include intellectual impairment, behavioral problems and the inability to have children. For more information, click here.
PWS causes the brain to think the body is hungry, even after a hearty meal. This never ending hunger kicks in at age two. Since Evan is still one, the disorder hasn’t appeared yet, but his parents are dreading the day. They are trying to enjoy every moment of his childhood, before the chronic hunger commences.
“Think about a time when you thought you were starving,” Evan’s mom said. “Someone with Prader-Willi has that sensation all the time. I think about driving home from work and I feel hungry, and then I think, ‘Will my son always feel that way?’ “
After dealing with two miscarriages, Natalie Brenneman gave birth to healthy Evan. The early screenings didn’t catch the PWS because it usually appears later in life. Nothing was going to stop this baby from entering the world.
When he was born, he had to be resuscitated. Things were in bad shape as he could not eat or breathe without a respirator. Shock settled in when Evan was diagnosed with PWS. These were their darkest days.
But they weren’t alone.
Through outreach, they found other families that were dealing with PWS and managing the symptoms. There was light at the end of the tunnel. When they started fundraising, they were surprised to see how many people were willing to help.
They are now busy advocates in the disorder, attending conferences such as the Foundation for PWS Research and co-hosting their own PWS walk in Avon. They are comforted by the fact that PWS can vary depending on the person. Some are able to live long independent lives.
These days, Evan is a regular little toddler.
He loves to play with his dog, Elmo, things with wheels, and do all the things that toddlers do. There is hope that Evan’s PWS may not be as severe as others. Natalie and Blake will soon find out, when the rare disease manifests.