Parenting a Rare Child - EazyHold

Please help us welcome our guest blogger, Pamela Tucker to EazyHold! Read her incredible story below and be sure to share your own experiences with raising a rare child in the comments below.

Prior to her birth, our daughter Harley was expected to be a “normal” and healthy child. We had no indications prenatally that she would have any complications or abnormalities after birth. When she was born we realized she had a cleft lip and microcephaly. Shortly after birth further testing was done and Harley was diagnosed with semi lobar Holoprosencephaly.

Holoprosencephaly (HPE) is a very rare brain disorder caused by failure of the embryo’s fore-brain to divide into the left & right halves of the brain.  HPE causes defects in the development of the face, brain structure, and it’s functions. Only 3% of fetuses with HPE survive to delivery & the vast majority of these infants do not survive past the first six months of life. Many children with HPE have complex medical issues including facial anomalies, seizure disorders, movement disorders, feeding difficulties, sleep disorders, diabetes insipidus, upper airway obstructions, and microcephaly.  HPE is a condition without a cure or a standard course of treatment. We were told that she would probably only live a few days or weeks and to take her home but to realize that she would never see her first birthday.

It was a very hard and emotional time for us as parents. We talked and prayed and realized that this was going to all be on Harley’s terms and that we would support her the best we could and help her to grow & thrive as much as possible. We had hope and faith that Harley was going to do so much more than those doctors said she would.

Harley is 11 years old now and in a few months we will celebrate her twelfth birthday. Although she has a long list of diagnosis & disorders that go along with HPE, she is really a very happy child who just needs some extra special care & attention. She enjoys going outside, music, and watching movies with her family. She likes being held and talked to and she really loves it when you rub her feet. She has the sweetest smile that always brightens up my day. Harley is such a strong girl and she never ceases to amaze me with how brave she is. She does have her challenges but with each day that passes it’s another reminder of how miraculous she is.

mother cuddling daughter with holoprosencephaly

Thankfully through this journey I’ve been blessed to meet other mothers and families of special needs children who thankfully have become some of my closest friends and  great sources of support. I feel like it’s so important to reach out to other special needs families and to let them know that we are all here to help and be a support system to one another.

There is a quote I came across a long time ago and it still speaks closely to how I feel as Harley’s mother.

I thought I would have to teach my daughter about the world, turns out I have to teach the world about my daughter. They see a girl who cannot speak; I see a miracle that does not need words.” - Unknown

Thank you so much to Pamela Tucker for writing this beautiful post
Follow along with her and Harley on Instagram at @harley61706

child with holoproencephaly using EazyHold universal cuff with a sensory bin


Judy Kelley

She’s beautiful! Those eyes/eyelashes are amazing!

Jesse Ramirez

Wow! You are awesome! Great job Pamela! Saludos!!!

Jesse Ramirez

Wow! You are awesome! Great job Pamela! Saludos!!!

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