"You can be happy even if you’re different, and you can still experience incredible simchas chayim even if you’re not perfectly healthy"

What is BPD?

A small percentage of newborn babies can’t breathe well on their own. They need medical intervention to stay alive. Doctors use a special machine, called a ventilator, which breathes for the baby. While the machine keeps the baby alive, it can also damage the baby’s lungs if it is used for too long. In some cases, the damage is extensive, and BPD (Bronchopulmonary dysplasia) sets in. Babies with BPD struggle with breathing and weight gain. In severe cases, these difficulties continue well into childhood.

Meet the Hero

Avigayil

is an adorable, red-headed second-grader with BPD and Bronchiolitis obliterans (another lung condition). Avigayil is the second youngest in her family of six kids. She is filled with simchas chayim, loves life, loves the color orange, and loves doing art projects!

Hi Avigayil! How does BPD affect your day-to-day life?

I am “medically fragile.” That means that I get sick more easily than most kids, and when I get sick, I get much sicker than most kids do. Catching a regular virus can mean that I need to go on oxygen for a week or so. “Going on oxygen” means that we use a special, large machine called an oxygen concentrator to give me oxygen through transparent tubes that go into my nose. Most of the time my lungs manage to get enough oxygen from the air, like your lungs do, but when I’m sick, I don’t get enough oxygen on my own. I have a machine that measures how much oxygen I have in my blood, called a pulse oximeter. When I’m sick, my mother checks me and decides if I need oxygen.

Because of my medical condition, I have a lower lung capacity than other kids. That means I get tired out more quickly from running and playing. Most of the time I can play like everyone else, but sometimes I need to stop and rest.

I’m also much smaller than other kids my age, because my body is working so hard to breathe that it doesn’t have much energy left to grow.

I have a PEG, which is a kind of feeding tube, to keep me gaining weight. Otherwise, I lose too many calories just from breathing.

A few weeks ago, I got hearing aids. Using oxygen long-term, like I did for the first few years of my life, can cause hearing loss. I had frequent hearing tests, and as soon as deterioration in my hearing was detected, I got hearing aids to help me hear.