By Jessie Evans

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On June 7, 2019, on the floor of our living room, I held my 7-month old son against my chest as he took his final breath. My husband and I clung to him and to each other as our hearts broke in ways we never thought possible. I wept uncontrollably as I held him and kissed him for the last time.

We welcomed Brady James into our world in November 2018. The NICU team whisked him away as soon as he was born. He was not crying. I saw the NICU nurses lifting his limbs and allowing them to drop to the table almost lifelessly. He had an oxygen cannula placed. The NICU team kept stealing glances at me as I sat there crying, asking if he was OK. I know now they were looking to see the face of a mother who was about to hear the worst news possible, a mother whose life was about to change forever.

When the NICU doctors spoke to us about genetic disorders, I focused on the difficulty of what we faced, the burden that it would impose on our family. I was terrified of sacrificing my happiness, the comfort and ease of our life, to forever take care of this little person’s constant needs. When I was finally able to hold him, my mindset shifted. He did not choose this. He was the victim. He was cheated. He was just a sweet, innocent little baby. I fell completely in love with him. He was my baby, and I wanted nothing more than to hold him, kiss him and love him.

Brady had a condition called Zellweger syndrome. It is part of a spectrum of peroxisomal disorders, an extremely rare condition where the peroxisomes in his cells did not function normally. He had severe hypotonia (decreased muscle tone); he could not nurse; he was blind and deaf; he needed supplemental oxygen, and he had brain abnormalities (polymicrogyria) that caused him to have seizures. Zellweger syndrome is an autosomal recessive disease, which means my husband and I both carry the rare mutation. There is a 1 in 50,000 chance of having a baby with someone with this mutation, and we found each other.

After two weeks in NICU, Brady came home to us with the help of the palliative care team at Partners In Care. Our neonatologists ordered special equipment for home medical care. Over the next week, our house transformed into a medical care facility as we were educated about tube feeding, kangaroo bags, continuous fluid administration sets, oxygen compressors, suction machines, heart rate and blood oxygen saturation monitoring devices and a plethora of anti-seizure medications. We had a car bed to transport him and a special stroller that would allow for him to lie comfortably and go for walks with his oxygen and monitoring devices.

There is no cure for Zellweger syndrome. Brady had a life expectancy of less than a year; we were privileged to care for him for seven months.

My husband and I are devastated. We are not only grieving the loss of our sweet son, but also the loss of the family we wanted.

Each night, I kiss his tiny urn goodnight and feel an ache in my heart that I know will be a permanent fixture in my life.

Oct. 5 is Pause for PBD Day, when the Global Foundation for Peroxisomal Disorders pauses to recognize and honor all of the families that have lost a child or are currently fighting a peroxisomal disorder. We hope everyone will Pause for Brady. Pause to think of our sweet boy and every other family who has lost a child to this terrible disease. Pause to be grateful for your child’s health. Pause to hope for a cure.

— Jessie Evans lives in Bend.