Jalyn's Story

What were some of the biggest challenges that come with this diagnosis?: Jalyn was your typical baby until she was 15.5 months old and she started regressing in her milestones and we noticed her legs would shake (clonus). We quickly let her primary care know and the following week, after advocating for her, we got a referral to a hospital 3 hours from home for a neurology consult which resulted in an MRI. Extensive damage to the white matter of her brain and spinal cord were detected. After genetic testing, it was confirmed she has Krabbe Disease. We thought we had a healthy little girl, but It turns out that this recessive genetic disease is taking nearly all of her physical capabilities away from her and most of her cognitive abilities.

How has this diagnosis impacted you and your child's day-to-day life?: We are currently getting a bone marrow transplant at UPMC in Pittsburgh and I have not been able to work while here. We had to leave our 4 year old son at home with grandparents and it has nearly torn our family apart. We have been here nearly 100 days already and we will expect to be here for a couple months more. This diagnosis has taken anything we thought was normal and turned it upside down. It had made us redefine who we are as people.

What do you wish others would know about your child's medical condition?: Please know that Krabbe Disease isn't her fault. No one knows if they carry a recessive trait and they won't know if they have a partner with this same trait. This diagnosis steals almost all of what these kids have and we search to give them everything and anything they can to enjoy the life they have yet to live. If kids have early infantile Krabbe, they usually don't make it past the age of 2. With late infantile and a transplant, we are really given no really idea of what her life expectancy will be, but we know it won't be long.

In what ways has your child inspired you or others?: She has inspired me to slow down and enjoy all the little things within this grief. She has taught me that you can feel both things at the same time. She has taught me to think differently, to ask differently, to advocate differently that I used to. I am her voice and I want what is best for her and I do want her to have things she can succeed with in life.

Tell me a little about your child (Personality traits, favorite toys, funny stories, etc.): Jalyn is sassy little girl who love to get your attention. She loves peek-a-boo and loves to smile when she is feeling good and is loving the company around her. She loves music and art therapy and is currently into knocking down any magnetic block structure you can build. She loves the water and the ocean and I can't wait to take her there again someday after we get out of the hospita.

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