A Mother’s Story: Krista Cowan Discusses her PBD Journey with 11-year old Jadin

Tell me about Jadin’s birth. Were there any complications?

Jadin Charles Cowan was born on January 28, 2006, a week later than expected.

I went to the hospital due to abdominal pain (it occurred whenever Jadin moved in the

womb). The doctors told me I had lost most of my amniotic fluid and my baby was in distress. I was given medication to induce labor and Jadin was born two hours later. He weighed 8 lbs. 4oz.

My son struggled to latch at first, but twenty-four hours later, he was breastfeeding without

any trouble. However, he did not pass his initial hearing screen. We tested his hearing a second time and the evaluation put Jadin in the moderate-severe range. We purchased his first hearing aids when he was about two months old. He still uses them today, but at 10, he is experiencing profound hearing loss in both ears.

Tell me about your family.

We have a his, mine and ours family. My husband, Jason, has two children from a previous

marriage, who are healthy and have no signs of PBD. I also have two healthy children from a previous marriage.

Were there other concerning signs during Jadin’s infancy?

Since we have older children, we knew from experience that Jadin was struggling

developmentally. In addition to hearing loss, we learned he is visually impaired. Jadin wore

glasses for a short period of time, but they did not help. He was diagnosed as legally blind

around four months old.

When did you learn Jadin had PBD?

At 18 months old, Jadin was not meeting his developmental milestones, which led us to

Neurology and Genetics at Children’s Hospital in Denver, Colorado. Jason and I learned we are PBD carriers, which led to more devastating news. Jadin was diagnosed with Neonatal Adrenoleukodystrpohy (NALD), which is considered the middle of the spectrum for this disorder.

Was the hospital familiar with PBD?

Jadin was the first case. There was not a lot known about the disease, so there was little

information available for families like ours. The doctors told us that PBD was terminal, and they said his life expectancy was about 10 years.

Who did you go to for emotional support?

Our family and friends have always been our support system. The hospital had a group for

parents whose children have terminal illnesses, but we did not use that resource, mostly

because it hit way too close to home. Jason and I just weren't ready.

How did you connect with the GFPD?

By chance, we came across an article in a local newspaper called Hand and Voices, about

another child with the same diagnosis. This lead us to the GFPD (Jadin was about 7 years old then). We attended our first conference in Nebraska. Finding the GFPD was such a relief, joy and comfort to us. We learned so much about PBD and how other families supported their kids. We also learned about the research being done to help uncover more. We realized we are not alone and connected with others like us who are struggling with this devastating disease. Our family can never express in words the gratitude and love we have for being part of the GFPD. The group gives us something to lean on when times are tough. We can also be a support for other families on this journey.

What has Jadin’s schooling been like?

We are lucky to have good special needs services in our district. Jadin began home-based

therapy for speech, vision, PT/OT at around 3-years old. He moved to the school system’s

special needs services when he started kindergarten. The school district now provides all of his therapies and a home-based teacher.

We chose to home school because his immune system is so easily compromised. Illnesses are 10 times worse for him than other children. We’ve found that home schooling keeps things consistent with his lessons and therapies, rather than pulling him out due to illness or viruses going around at school.

In addition to Jadin’s teacher, do you also work with Jadin during the school day?

Our school district operates on a four-day week, so they give Jason and I life skills to practice with Jadin on the days his teacher isn’t with us. We have a choice board for Jadin with 3-4 things he can choose to include with his practice. The choices include baths, using his vibrating tooth brush, time in his bouncy chair and cuddles.

Are you and your husband able to work full-time?

Our state is fortunate to have a program called Access on Independence, which pays a

trained caregiver to help us. His older sister is his current caregiver and my husband and I are his primary caregivers during the evenings and weekends. The program makes it possible for Jason and I to maintain our full-time jobs and provide for the family.

What’s Jadin like?

From birth, Jadin’s personality radiates love, comfort and laughter. He is the most easy-going, flexible child. He definitely prefers to be at home, but we have made several road trips to Florida and California with him to visit family, and of course, on-going appointments at the hospital in Denver where he sees a variety of doctors (a metabolic specialist, an

endocrinologist, neurologist, rehabilitation specialist, audiologist, opthalmologist, and a

dentist).

How does Jadin get around?

Jadin travels in a car seat or double-buckled with a family member in the back seat. He has several pillows for support, due to hip dysplasiaia.

Is Jadin able to move on his own?

He can roll from side to side or tummy to back (although at 11-years old, he still does not

like this position). Jadin can sit with assistance, but he is not mobile in any other way. When he was younger, he used Ankle Foot Orthoses, supports to help the position and motion of the ankles, to help with walking. However due to his low muscle tone and our desire for him to have the best quality life, Jason and I did not push walking very hard.

Is PT/OT challenging for Jadin?

Always. Jadin’s ongoing discomfort/stress, coupled with lots of tears, made it hard for us to

keep up therapy for long stretches of time.

Do you wish you had pushed harder?

I am not sure. Looking back, I wonder if we did him an injustice, but we are okay with where he is now. Our family provides all we can to keep him as comfortable and happy as possible.

What’s it like to have this sweet boy in your life?

Jadin is the center of our world. We are so grateful for each and every day we have with him.

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