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Some Kid

10 Mar

As an administrator of the FamiliesforHoPE.org website, I’ve been spending time making updates to the site in preparation for a new look to be unveiled later this month during Holoprosencephaly Awareness Week.  As a result, I came across this post I had written in 2010, and thought I’d share it here since I referenced Sammy.

Some Kid

Throughout my journey in the HPE world, I have had the privilege to personally meet many individuals with HPE. So often, I find that I don’t even have the words to adequately describe the encounter because I’m so humbled by the experience. I can recite the definition of holoprosencephaly forward and backward in my sleep; I can quote statistics off the tip of my tongue; and, I can explain the symptoms and secondary conditions that are common with the diagnosis without missing a beat. Like many of you, I feel as if I may have earned a Ph.D. in HPE, if there were such a thing.

I can tell you all about what our children have, but when it comes to describing who our children are, I do not have concise words to adequately describe them all–I could talk for days on end about all of our amazing kids with HPE. With my own son, Sammy, there are moments when I catch myself saying, “He was some kid.” Not “some kid” as in a random, nameless person; but “some kid” in that he was spectacular, similar to the phrase, “Wow, that was some game we watched last night.

Charlotte's WebSome kid” makes me think of Charlotte’s Web, the classic children’s novel by E.B. White. From the very first line, we learn that the life of Wilbur is threatened. Wilbur, a newly-born piglet, is described as “very small and weak, and it will never amount to anything.” A barn spider named Charlotte is determined to save Wilbur, so she spins a web in the barn that reads “Some Pig” in an attempt to convince the farmer and the surrounding community that Wilbur is special and should be saved.

As parents of children with HPE, we know our children are something very special, but too often, we see the looks and hear the whispers of others in our communities (and sadly, even members of our own families at times) who view our kids like little Wilbur. In her attempt to save Wilbur, Charlotte also created other webs describing Wilbur as, “terrific“, “radiant“, and “humble“.

If you were to weave a web over your child to describe him/her in 1-2 words, what would your web say?
Terrific

Reality of HoPE

22 Nov

I know that it can be uncomfortable to be my friend especially when I share updates on children who are sick or dying. My deepest desire is that no parent would face a life-threatening diagnosis for his/her child and none of my friends would experience the pain and heartbreak of saying goodbye to one’s child.

Can I tell you a little bit about Holoprosencephaly (HPE)? It is the most common brain malformation in a developing fetus. It occurs during days 17-21 of fetal development, and as a result, it often ends in early miscarriage. It is estimated that HPE occurs 1 in every 250 pregnancies, so if you experienced a miscarriage without an explanation of why, HPE could be the reason.

Did you know that the likelihood of a fetus with HPE surviving to birth is only 3%? Let me say that again…3%! Can you imagine the determination and will it must take to overcome those odds?

When one of our children with HPE passes away, it rocks our HPE community. We grieve for the parents, siblings and families, but I know we also celebrate the power and strength these children have had in the moments, hours, days and years that have made up the lifetimes they have known.

I will never be as strong and courageous as these little ones have been in their lives, but their examples push me to step outside of my comfort zone, to give of myself to others in sharing my journey from HPE to HoPE.

If you would like to know more about HPE or would like to help our cause, please visit http://www.FamiliesforHoPE.org. To learn more about my personal journey, visit http://www.SammyYammy.com.

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A Perfect “10”

20 Mar

On January 10, 2003, we received the diagnosis of Holoprosencephaly (HPE) for our unborn baby. The specialist described HPE as 10 times worse than Down Syndrome.

On April 10, 2003, Samuel Aaron Harley was born weighing 6 lbs., 10 oz.

If he were with us today, Sammy would be celebrating his 10th birthday on April 10.

If he had been born without HPE, Sammy would be living a typical 10 year-old boy’s life, and we would be patiently waiting to see what he might grow up to become and how the adult Sammy might make an impact on the future world.

Instead, Sammy was born with HPE, and before he even left the womb, he was already making an impact on the world. In the 5 years he was here with us, he melted hearts by his sweet innocence, and he taught others through his determination and perseverance.

In honor of Sammy’s 10th birthday, it seems only fitting to celebrate the number 10.

What you see below is the formation of a ripple that started with Sammy, and I would ask you to help his ripple grow on this 10th birthday. Sammy was one of the children who helped inspire the formation of Families for HoPE, Inc., and I will be participating in the annual Walking for Dreams fundraising walk on Sunday, May 19 at the Downtown Indianapolis Canal. 100% of the funds raised by my team directly benefits Families for HoPE.

The first ring around Sammy’s photo contains 10 circles and within those 10 circles are room for 10 names. I am seeking 10 friends who will donate $10 to join my team and walk with me in honor of Sammy. Then, I would like those 10 friends to get 10 of their friends to donate $10, and ask those friends to consider walking with us in honor of Sammy, too. (Below is a picture of what my 10 friends will receive to share with their 10 friends.) My goal is to completely fill Sammy’s ripple with names to create my “perfect 10“.

Now, imagine if those 10 friends asked 10 of their friends to donate $10 and they walked with us in honor of Sammy, too. Do you see the ripple forming?

The thing about Sammy is that he couldn’t participate in an event like this because HPE made him unable to walk. Also, Sammy couldn’t ask you to donate $10 and walk on his team because HPE made him unable to talk. He couldn’t walk or talk, yet he made quite an impact on the world.

Will you be a part of the ripple that Sammy started? Will you be one of my “perfect 10 friends?

1-Perfect 10 Ripples

If you would like to start your own ‘perfect 10″ ripple for Sammy, please email me at LeslieHarley527@gmail.com, and I will send you the file so that you can add your 10 friends and their 10 friends to the ripple.

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