The beauty 

By Ramona Joyce

When I found Families for HoPE, Leah Faith was 2 years old, and they had just had their first family conference. I hated that we had missed it because I needed it. I was determined we would be at the next one in 2008! I remember getting an email from Leslie that I was the first to register for the 2008 conference. I had no idea at that time just how much I needed it.

The bond I felt immediately with families I’d never met before is impossible to explain. It was beautifully overwhelming, emotional, spiritual. Families that were on the same journey of hope as my family.

I remember clearly sitting in a conference room with Dr. Eric Levy speaking and I couldn’t tell you everything he said, I was caught up in my surroundings. My daughter is very noisy but there was an older girl, Kristen, who was noisier and I loved it! There were suction machines running, children being fed through tubes, seizures happening, some crying, squealing and it was all so beautiful to me. The beauty of being surrounded by families and people who were not put off or grossed out by each other’s children is unexplainable in my world.

I was given information at that conference that I needed. But I was given so much more, I was given Hope!

My Leah Faith was 4 years old then; she is 12 now, and we’ve been blessed to attend every conference since then. My oldest daughter, Sadie was 9 at the first conference we attended; she’s 17 now. She bonded immediately with all the children with Holoprosencephaly and with their siblings who are on the same journey as she is. She drops any plans with friends because being at the conference is more important to her. It has been life altering for us as a family!

I realized at the 2014 conference that I’m now a “veteran” to some of the younger moms. Just as I pull from the experience and wisdom of the moms with children older than mine, they’re looking to me, Leah Faith, and even Sadie for their hope. The families whose child has left this world, bring such grace, and yes, more hope to all of us on this journey. It’s humbling, it’s beautiful, it’s family!

The sad fact is that we don’t know which children will not be with us at the next conference, so we soak up every single second that we can. We laugh, we cry, we learn, we celebrate, we embrace each other, and we embrace the journey. We would not be able to have this experience without Families for HoPE, Inc.

You can help make the 2018 Family Conference on Holoprosencephaly a reality for HPE families with a donation to Families for HoPE.


By Pamela Tucker

For my family, the Families for HoPE conference is a time in which we are able to bond and connect with others who know the challenges in raising a child with HPE. Although we are blessed to have a supportive family and close group of friends, it’s very hard for most people to understand our reality. The few days, every two years that we get to spend with our “HoPE family” are something that we always cherish and look forward to. The comfort I find in sitting at a table or snuggled up on a couch with other moms and their children are times that I will never forget. It’s an easy, safe, open environment in which you don’t feel judged or feel like you are an outsider. You feel accepted, loved, cared for. It’s impossible to not feel the hope in the air. For our family taking a yearly vacation with a medically complex child is just not feasible.

The conference gives us a chance to have a real vacation which includes our daughter and activities catered around her and her needs. It’s a time we truly treasure and also a time that allows me as a mother to feel rejuvenated and gives my spirit a lift.

You can help make the 2018 Family Conference on Holoprosencephaly a reality for HPE families with a donation to Families for HoPE.

Sisterhood of the Traveling Dress

By Brandy McIntyre

Once you start a journey with a special needs child, you read. You read all you can about their diagnosis. You read what life is like being the parent of a special needs child. You fill your brain with enormous amounts of knowledge. Sometimes you think your head will explode. I remember very early on and very clearly reading an article that marriages fail and you will lose friendships while on this journey. I felt a lump in my throat. How could this happen too on top of everything else that is going to change? I also thought that no way could this happen to me. But just like I thought I could never have a special needs child, my social life has definitely changed.

img_8388One thing that I never read about or was never prepared for was the friendships that I HAVE made. Thanks to social media and online support groups, our journey has been beautiful and never lonely. Very early on I made three new and beautiful friendships that I will cherish as long as I live. Because our children were all born around the same time, Rachel, Heather, Kristy and I formed a tight bond. All four of us completely different. Rachel was the godly Southern woman. Heather and I are the two oldest and by far loudest. Kristy is the baby. Heather and I both had two older daughters before having our child with HPE. Kristy and Rachel were both first-time moms. Two lived in Texas, one in Louisiana and the other in Mississippi. We were lucky that geographically we were close. This led to many trips to be together and spend time feeling normal.

A few years ago, we were heartbroken when our sweet friend Rachel passed away completely unexpected. It was devastating. Quickly Charlotte, Rachel’s sister, came into our fold. Her love for her niece, Jane, is undeniable. Even though life gets busy, and we don’t have the late nights to chat anymore since all our kiddos are now 4 years old and mostly behaving, we have a special sisterhood that will always be there. I love them all so much.

Our friendship is special. So special that when you ask your friend to strip naked and lend you her prom dress, she does it without a second thought. The night of the prom, I had a gorgeous dress, but when rumored riots threatened the safety of our families, action took over and I had no time to dress. So I threw on my Families for HoPE board shirt and headed to prom even though my handsome husband and three daughters were dressed to the nines.

Once we were at the prom I became envious of all the families taking pictures in their dressy clothes. I looked over and saw Heather in her huge, blue ball gown. I knew my problem was solved. Without question, Heather went with me into the bathroom, took off her dress and remained naked in a stall until I returned from taking a picture with my beautiful family. I had no makeup on and my hair was a mess, but my dress was PERFECT!

There are so many moms that I have met on this journey from Families for HoPE. My love for them and their children is indescribable. It’s bigger than my heart. Whenever I have the “why me” moments, I know God gave me my beautiful Mary Elizabeth so my life could be blessed by these women.


You can help make the 2018 Family Conference on Holoprosencephaly a reality for HPE families with a donation to Families for HoPE.

Journey Reminder 

By Cheryl Lehman

My family and I have attended almost every conference (2004, 2008, 2010, 2012, 2014 and 2016). We always look forward to these “family vacations” to get acquainted with our other “family” – our holoprosencephaly family. 2016 was different for me as it was the first time I have attended as a board member.

Leslie Harley had thought of a wonderful idea of creating a picture with all of the kids’ thumbprints on them. I volunteered to be in charge of this project and created a 2016 HPE family tree. During the conference, it was time consuming making sure ALL of the children in attendance were included (I would have felt terrible if we had left someone out!), but it was truly a blessing to get to meet each and every child and their parents! Although all these kids have the same brain abnormality, I could see first-hand how each child was so different yet their beauty shines through their challenges! HPE manifests itself in so many different ways and severities, but every one of these children bring great light to this world!

There were also a few devoted parents in attendance whose children are in their wonderful eternal home. I cannot imagine how hard it is to see the other families with their children when their arms are empty. Although this part of HPE is heartbreaking, they carry the legacy of their children on with their commitment to the other families. Therefore, we included these parents’ thumbprints in the sky in honor of their angels and turned them into balloons. This idea coincides with our tradition of releasing a balloon during the conferences for all the children who have passed away yet continue to impact this world.

This project also gave me the opportunity to talk to all the parents. I realize that although our lives are different in many ways, our journeys are very similar. Our unconditional love and passion for doing the best for our children are the same. And, there is nothing more comforting than knowing we are not travelling alone! The stories and information shared at these conferences are priceless! It is much more than just someone on the other side of the keyboard, too. It is real human interaction – the hugs, laughs and tears! We share our struggles, frustration, joy, sadness and HoPE that only other parents with kids like ours can truly understand.

Now, I have a daily reminder of these special souls I can see everyday hanging in my daughter’s bedroom. What a very special reminder of the family I will reunite with in 2018.

You can help make the 2018 Family Conference on Holoprosencephaly a reality for HPE families with a donation to Families for HoPE.

Hercules’ Journey 

When a little boy with HPE passed away last year, his mom wanted to find a new home for her son’s service dog. By connecting with Families for HoPE, this mom became friends with Charlie’s mom, and she asked if Charlie would like the dog. Charlie said yes, of course! Charlie’s mom remembered another parent she met at the Families for HoPE’s most recent conference, and that parent was a pilot. The pilot heard the story and volunteered to pick up and care for the dog as he travelled from Miami to Phoenix. Now, Hercules the Service Dog is with Charlie’s family. Families for HoPE was able to serve as the connector between these families to bring hope to a child with HPE and everyone involved.

Written by Dana McNulty, Lessonly

Embrace the Journey with Carol-Lynn

By Jody Pautsch-Wygans

About three and a half years ago, we learned of an expectant mother who was looking to find a family for her unborn child. Shortly after we agreed to bring the child into our family we found out that there were “complications” with the baby. In utero doctors diagnosed Carol-Lynn with Holoprosencephaly (aka HPE or affectionately referred to as HoPE). We didn’t know what this meant. We didn’t have the “luxury” of asking doctors our questions. The information we were given was very limited by Google and the information the birth mother was able to comprehend and willing to pass along. I don’t know to what extent she asked questions and I don’t know to what extend those questions were or were not answered. All I know is that the information that was passed along to my husband, Greg, and myself was bleak to put it lightly.

We were at one point told by the birth mother that she no longer planned to let us adopt the baby because she didn’t want to give us “damaged merchandise.” We were told her chances of surviving birth were minimal at best and that if she did indeed survive to birth, her chances of living any length of time were even more slim. We were told she would have severe physical deformities, mainly facially. We were told that her ability to learn and to perform even the necessary tasks of survival such as breathing and eating would be greatly compromised at best.

NEVER were we EVER given any glimpse of HOPE for this unborn child. Fortunately, that’s not how my heart (or mind) work. I don’t believe you EVER just GIVE UP….especially on a child. I believe that God always has a plan and that though we may often not comprehend His plan, it is there. And while I realize that there are sweet spirits who enter this world for but a brief very precious moment, we can NOT give up on any of those sweet spirits until the time comes that our Father in Heaven calls them home to be with Him again. And when it came to Carol-Lynn, in my heart of hearts I believed she had been put into my path because I was supposed to hold out HOPE for her. So regardless of what bleak information I was told prior to birth, I continued to hold onto HOPE for her.

I continued to pray for her and I continued to love her just as I would have had she been developing within my very own body. For while she wasn’t developing within my body, she WAS developing within my heart and spiritually I could FEEL her sweet spirit surrounding me. There was no way I was going to give up on her. But I will admit that I felt very much confused, alone, and scared. As I felt that if I was ever going to hold that precious child in my arms, it would be with minimal support outside of my immediate family and with very little background knowledge as to what I was facing until I was actually facing it. In hindsight, this may have been as much a blessing as it was a curse.

Fast forward a few months and our precious angel had, indeed, been born. She entered the world despite the negativity surrounding her. Sadly I missed those first moments. Though it had been the plan that Greg and I would be in the hospital when she was born, things changed and we were not informed of her birth.

I would like to put a brief disclaimer in here that I do NOT hold any of the events that took place against her birth mother. While this was one of the most difficult times in my life, waiting and wondering what would happen, I CAN NOT IMAGINE what the birth mother was going through. And I don’t for a minute want to allow any negative thoughts coming from those reading this because this woman gave my family one of the greatest gifts another human can give. And she did so with a generous heart. And to this day, she loves our sweet angel. She just knew she was not equipped to raise her. I don’t walk her path, and I don’t have the right to judge her thoughts nor her actions. But I do have the right and the ability to be FOREVER thankful for the most precious gift that she gave to me….a true angel residing in my own home.

Anyway, I was given one chance to meet Carol-Lynn while she was in the hospital in the NICU. Basically that was to be my chance to say hi and good bye to the daughter that I knew was supposed to be in my home. Her birth mother had decided to take her “home” on hospice care after a little more than a week stint in the NICU. Not many days after they left the hospital I received the text I had been PRAYING for…”Come get her.” Long story short we did, indeed get to become parents to Carol-Lynn and we began a journey that would change our lives FOREVER. But we were completely alone and unaware of where to begin for answers. Then in steps Families for HoPE.

There are NO WORDS to express the instant family we found when we discovered Families for HoPE. The support is unmeasured. We slowly began reading the stories of other families who were dealing with similar issues as our own when it comes to the medical aspect of Carol-Lynn’s life. We developed relationships over the internet and quickly knew that if ever we needed advice, a shoulder, understanding, etc, we KNEW where to find it.

But in our wildest dreams we never imagined those people who we were watching from afar would ever be physically IN our lives. We saw them more as a part of a little fantasy world. Sort of like reading a good self help book, but getting active responses to any questions that arise. While it was amazing to have that instant access to families via the internet, we still felt somewhat alone in our journey. UNTIL we heard about this thing the group does once every two years…a CONFERENCE! Seriously?

A CONFERENCE where these families gather and share experiences, learn from one another, learn from a group of doctors and professionals TOGETHER, support one another, hug one another, cry together, laugh together, experience THIS part of life TOGETHER? ARE YOU KIDDING ME? What seemed like a fantasy world, could be a part of REAL life? IF ONLY!!!

Yes, the idea of a conference sounded amazing. And I knew, without a doubt that it was EXACTLY what we needed. But what would hold us back?? MONEY!!!! When we adopted Carol-Lynn we were truly in no financial position to be able to AFFORD an adoption. We already had four healthy, active boys and financially we were busting at the seams just to support them. But God placed this little girl in our path and He placed it in our hearts that we needed to bring her into our home. So, despite our own financial reservations, we took a leap of faith and placed our faith in the Hands of the Lord to help provide financially. Somehow it all worked out…the funds showed up here and there in small bits and in strange ways which funded the actual adoption.

But about the time we finally had that nearly paid for Greg lost his job. Finding a new one was proving to be difficult and a trip to Texas to this “dream” that our support group was calling a conference seemed like a luxury we could NOT EVEN CONSIDER being able to afford. But then we found out that there are scholarships available. What does THIS mean?

Well, basically if we could get ourselves TO the conference, we could get help in funding part of the expenses OF the conference. While even funding the trip itself would be a chunk, we set out to raise funds to pay for gas, meals along the way, and hotels along the way. And lo and behold, we were able to raise almost exactly what we needed to make that trip possible. AND once we got TO the conference, Families for HoPE helped us to afford the conference itself. This was a blessing that again, has no words.

I was asked to write about journey to the conference–physical, logistical, emotional, spiritual, etc. Physically, it wasn’t necessarily easy. We had raised funds to get us there. But we still had to travel as inexpensively as possible. We couldn’t afford to fly our family, so it was a long car trip, where we drove long hours to limit the need of many hotel stays. We ate sandwiches we prepared by the roadside in order to cut back on the expense of eating out. Traveling this way meant our kids were stuck in the car for extended periods of time and we all know how that can often prove to be difficult, but they were amazing and they knew the sacrifice was worth it.

Traveling like this with Carol-Lynn also had its challenges. At the time she was not yet on her feeding tube so her nourishment was in the form of a bottle. This was a long and difficult process and often while we traveled she would outright refuse to eat. Carol-Lynn had been termed “failure to thrive” and was already struggling to get enough nourishment on a good day. While this was in many ways VERY stressful for us, it also meant that there was less to clean up when she spit up. For, with Carol-Lynn 75% or more of what went down came back up. So yes, traveling like this at that time was a bit stressful but we believed that it would prove to be worth the effort.

In addition to the concerns over her nourishment during our travel, we stressed over seizures along the way. At the time Carol-Lynn was having intractable, status seizures, meaning it was not unusual for her to seize for hours upon hours, even after we had administered her rescue meds. Often she required a visit to the emergency room where they would give her additional medications to help bring her back to us. The stress of being in route to anywhere at that time was real. But again, we believed it was well worth the risk involved.

Emotionally we NEEDED this for our family, for ourselves, for our daughter. We NEEDED to physically see and hear and be with other families who truly understood our journey in a way that no other individual in our lives did. Did we know other families with special needs kiddos, ABSOLUTELY we did (and do). And what a great support those individuals and families are. But there are absolutely NO WORDS to describe the gain that we experienced by being a part of this conference. ABSOLUTELY NO WORDS!!!

Spiritually this was one of if not the most uplifting experiences I have ever been blessed with. As we gathered in the hotel filled with other HoPE families and other HoPE children, the spirit in that hotel was STRONG! Imagine, being in a room filled with angels…THAT is what it was like. We gained insights, we saw things we could use to make our lives easier, to make life more fulfilling for Carol-Lynn. Later as we gathered in the hospital conference rooms with these same families and all of the experts in the field, we learned things and we got ideas, and we knew we were on a path we could continue with confidence.

We were given a chance to learn, to play, and even to DANCE with these families. I get goosebumps even as I type that word dance. Because at the conclusion of the conference they put on the most amazing prom I have ever experienced. There were no labels, there were no limits….EVERYONE was invited to dance and to sing and to play together. My daughter danced with her daddy in the most glorious dress and she heard her friends dancing with their mommies, daddies, sisters, brothers, friends.

What did being able to attend this conference mean to our family? It meant EVERYTHING!!! It meant those families whom we had met only online were REAL and that they really WERE a part of our world. And we were able to build bonds that will last a life time. It meant that as we reached out to and met other families online that we KNEW they were real too and that they would some day be in our lives not only via the world wide web but physically a part of our lives.

One more thing I need to add….not only were we able to rub shoulders with other families in a similar place upon their HoPE journey, but even more amazingly, we were able to rub shoulders with other families who had sent their HoPE loved ones into the arms of our Father in Heaven. And they still remained a part of this amazing family who are there to support one another through the ENTIRE journey. Because guess what folks? This journey is one that NEVER ends. It is an ETERNAL journey. And we are all on it together. During the days of the conference we were lucky enough to take time out to honor those loved ones who were watching from on high. And we were able to pause and feel of their spirits as they still touched our lives from their heavenly thrones. I was honored to experience every aspect of this conference but the moments we spent releasing balloons to honor each HoPE child who was watching from a heavenly home were moments that will forever live in my heart!

Families for HoPE exactly that….a place to find HOPE when the journey seems bleak!!!

You can help make the 2018 Family Conference on Holoprosencephaly a reality for HPE families with a donation to Families for HoPE.

Embrace the Journey

Many HPE families refer to their lives as a journey.  In her essay Welcome to Holland, Emily Perl Kingley relates life as the parent of a child born with a disability as a much-anticipated trip with an unanticipated destination and unimagined experiences.

There is no denying that the earliest stage of the HPE journey is emotionally devastating and without hope. This is the “Why?” phase of the journey because the answer to that one-word question is what all seek but very few find.

There is also the “What if…?” phase, and that’s where one travels from hopeless to hopeful.

Next is the “What about…?” phase where new dreams and possibilities exist and advocacy becomes a focus.

And sometimes the journey transitions into the “What now…?” phase where the silence is loud and a parents’ arms were once full but are now empty.

It is a journey that is both grueling and heartbreaking, but also beautiful and momentous.  Embrace the Journey.

Keeping Score for BFG Tournament

Our sincere gratitude to those who have scored points for Families for HoPE in our run in the 2017 Brackets For Good tournament!

Round 1 – February 24-March 3

Would you like to see your name here? Donate Now!

Dana McNulty
Ryan Elliott
Pete Turner
Kim Brunz
Stephanie Lemke
Kelly Irvin
Barb Brown
Larisa Denney
Ramona Joyce
Patric Goble
Julia Feeney
Carmen Navarro
Pamela Tucker
Anne Schupp
Rick McKenzie
Ronald Christensen
Julie Lyford
Molly Johnson
Heather Stauft
Arika Gates
Maureen Grover
Dana McNulty
Alex Bantz
Cathy Leonard
Josh Timmerman
Darlene Wilhoit
Tricia Raney
Aaron and Debra Gatewood
Mike Lopez
Rosie Jones
Melinda Fisher
Wendy Horn
Sharon Mansell
Stephanie Schmitt
Carolina Braga
Karen McFarland
Joyce Stingley
Neal and Janet Quast
Susan Ekelman-Storey, in honor of Charlie Dawn
Adam Neddo
Genny Short
Ann Nevins
Lauren Balderas
Bruce Timmerman
Marlana LaFountain
Becky Wilson
Heather Rinard
Leslie Harley
Judee Howard, in honor of the Irvin family
Keisha Choate
Pamela Heins
Nikki Tuma
Roxanne Steele, in memory and celebration of our journey with Rachel

Score Points for Families for HoPE!

For the second year, Families for HoPE has been selected to participate in Brackets For Good 2017! This is the only sport for nonprofits and everyone can play in this game! The competitive giving action tips off the evening of Friday, February 24th and we need your help!  In Round 1, our opponent is Outrun the Sun, an organization in Indianapolis, and we need to score more points than they do by 7:59pm on Friday, March 3.

In the 2016 tournament, Families for HoPE (aka the Cinderella Team) won Round 1 against our opponent American Heart Association of Indiana!  We advanced to Round 2 and were pitted against a tournament veteran, the Joseph Maley Foundation.  We were not victorious in Round 2; however, Families for HoPE raised over $10,000, and we were selected as #1 of BFG’s Indy Top Ten Round 1 highlights!  The Joseph Maley Foundation went on to win in subsequent rounds and earned the title 2016 Indianapolis Brackets For Good Champion.

In 2017, we want to win Rounds 1 and 2 and advance to the “Supported 16”, and here is how you can help our cause have success in Philanthropy’s BIG Dance!

  • How does Brackets For Good work? Check out this :60 video

  • Help us advance by putting your points on the board! View our matchup
  • Text “FFH” to 27722 to donate
  • Follow our social feeds for the latest news, tournament highlights, and score updates!


  • Share our participation in the tournament with your social network to help grow our bench!

Can we count on you to be an MVP for Families for HoPE?

Journey of HoPE to Dallas

In July 2016, over 70 HPE families embarked on a journey from all corners of the U.S. to Dallas, Texas for the 2016 Family Conference on HPE.  Held biennially, the conference is a collaborative endeavor among Families for HoPE, the Carter Centers for Research in Holoprosencephaly, Texas Scottish Rite Hospital for Children and National Institutes of Health. The conference educates families on the latest advances in treatment and research, along with hands-on workshops and social sessions to enrich the lives and health of the families who attend.

Only a few days prior to kicking off the 2016 conference, we learned of the deadly sniper attack on police officers in downtown Dallas. The HPE families each evaluated the situation knowing that they would be traveling to a city where tensions were expected to run high.

As a group who epitomizes hope in the midst of great uncertainty, each of our HPE families resolved to embrace the journey, to press onward and to share their hope with the grieving citizens of Dallas.



To help Families for HoPE raise funds necessary for HPE families to attend the 2018 Family Conference on Holoprosencephaly, please donate to Families for HoPE in the 2017 Brackets For Good fundraising tournament.  The deadline to donate is Friday, March 10 at 7:59pm EST.

I run 4 Michael/Hannah

I started running for Hannah after I was partnered with her and her family on the “I Run 4 Michael” Facebook group. I have simply found her to be a truly inspirational little girl who really makes life seem worth living and doing as much as you can whilst your here.

I started running when I moved to Northampton in 2009 and completed some 10K’s and half marathon’s. I also decided to take up triathlon and moved from Sprint to half-iron distance races. Then to test myself a bit more I moved up to full marathon’s and Iron distance triathlons.
All seemed well in my life until 2012 when my wife lost our first child at 14 weeks, the baby had originally been a set of triplets but her body rejected the first two and the third unfortunately did not survive the pregnancy. It was in this time my sister introduced me to the running group “I run 4 Michael” as her youngest son was born with Down Syndrome.  I was then partnered with Hannah and her amazing family.

Since our partnership, we have had two beautiful children ourselves, and next year I turn 40. I had heard about the Marathon des Sables and had the fortune to meet a man at University who was taking part in it. I decided that this would be a great chance for me to do something really challenging that would help me to raise some awareness and money for your amazing charity. I also want to be able to send my finishers medal to Hannah and her family to say thank you for being a true inspiration and reminding me that the only way to face challenges in life is with a smile on your face, just like Hannah!


New NIH Study on Environmental Determinants of Holoprosencephaly

New NIH study on Environmental Determinants of Holoprosencephaly 

We understand only a fraction of the causes of holoprosencephaly and what leads to the wide spectrum of clinical features seen in patients with holoprosencephaly. In this new environmental study, we are trying to better understand the different factors that can contribute to holoprosencephaly and its presentation that often varies from patient to patient.

What does the study entail?

Filling out out a 45-minute online survey

What does the survey ask about?

The survey asks about your pregnancy and the three months before pregnancy. Please go to to get more information.

We are actively recruiting to reach our study goal of 200 participants!

If you are interested in filling out the survey:

*There is no compensation for this study

August 27 – Racing for HoPE 2016


Emily Pruitt, San Marcos, Texas

How Families for HoPE has saved my family

By James Pruitt

For those of you who did not get a chance to meet me at the 2016 Families for HoPE Conference, my name is James Pruitt, and I have a 3-year-old daughter, Emily, who has Semi-Lobar HPE. We just got back from the conference, and it has been a truly life changing experience for me and my family.

Today, I wanted to write a little and share some of my experiences as a dad at the conference, and why I would make any effort, no matter what it takes to come back.

However, first I want to give you a little background about me and my family so that you know where I am coming from. That way it will all make sense.

In 2012, My wife Jessica and I got engaged on Christmas Day. In January of 2013, we found out we were having a baby. A few weeks later, we went for a sonogram and learned of the HPE.

The day we learned about the HPE, we were told we had about 2 days to decide if we wanted to abort the pregnancy. We each prayed on it and decided to keep the baby, and give her a fighting chance. As we researched names, we found that Emily means ìStrong Willed and decided she would definitely need that to survive what was to come.

The pregnancy went along with a few rough patches and constantly being told she wouldn’t make it, and that she didn’t have a chance of leaving the hospital.

Many of you have heard the same stories, and so you know how the medical field, who probably learned all they know about HPE by reading about it on the same outdated websites we did, often react.

So, to make a really long story short, in early July, my family had a major blow up that left me an emotional wreck, and having absolutely zero trust in my father, who was one of my biggest supporters in many ways beforehand.
All this happened with the baby due in just a few weeks.

We scheduled C-section for Aug 5, but true to her ìStrong Willed name, Emily decided to do it her own way and come July 31 at 230 am. She was 5 lb. 12oz and 15.5in. She hasn’t grown much since then.  At 3, she is now 16 lb. and 27.5 inches.

She has Semi-Lobar HPE, microcephaly, a large dent in the top of her head where part of the frontal lobe did not form, Skeletal Scoliosis with 4 Hemi-vertebrates, and a cleft soft palate.

However, she was strong willed. After only 10 days in the NICU, she got to go home. But, it was a struggle. Although she didn’t have as many medical issues as many of the other HPE kids we met, she has severe motor skill developmental delays and is slow to grow. She also has very little control on the left side of her body. Her right hand and leg are much stronger and more controlled.

I was struggling to make ends meet, and eventually wound up working as a Correctional Officer at a small prison near where we live, which is where I still work to this day.

Over the last 3 years, we have had many struggles financially, losses in our family including my mom, and my mother in law having severe liver problems with frequent hospitalizations. Balancing all that while still trying to do what was best for Emily has been a huge struggle for all of us.

We got to where we were always just waiting for the next big crisis to hit, and never knowing where it would come from.

Early this year, things got really bad. Frequent illnesses from our entire household had us at a breaking point, and our marriage was falling apart. We started fighting constantly, and couldn’t even talk about Emily’s care, or even small things like what to cook for dinner without it erupting into a massive argument.

Coming up to the conference, we had even discussed (usually in heated arguments) getting a divorce. It got to a point where we were making threats, and had to at least come to agree to not use Emily as a weapon to hurt each other. We both at least agreed that the person who would be hurt the most by that was Emily, and neither of us wanted that.

So, at long last we got down to time to go to the conference, and we made it.

I cannot express how much this time meant to me and my family.

For starters, during the men’s meeting, several talked about their marriage difficulties, and someone (I am sorry, I cannot remember who said it to credit them properly) said we decided we had to focus on something bigger than ourselves and work it out.

That really hit home for me. Although I struggled with it, I knew that was what I needed to do. I have always said I had to do what was best for Emily, and that is what is best for her. Through talking with the families, we also found some great ideas to help us do that.

I also realized through the conference that we are both experiencing severe burnout, not just from Emily’s care, but from all the outside influences that have been getting in the way. Although our families are really important to us, we cannot lose sight of our focus. We have to take care of Emily and our household first and foremost.

I also don’t feel so alone. We connected with so many people that really understand the strain we have been under. With all the Doctors visits, equipment, coordinating schedules, etc., it has been a huge burden that we felt like nobody understood. Now we know that there are others out there going through the same thing.

Although our families try to be supportive, they don’t really understand.

I also have so much more gratitude now that things have been as mild as it was. I have seen families that have to make huge choices that are life and death decisions that thankfully we have never had to face. However, I am also more prepared than ever to make those choices if things go that way.

Thanks to Dr. Delgado, we actually learned more about Emily’s condition, and severity of it, that he thought we already knew. Being around, we learned what questions we should have been asking that we weren’t. Now, we are better prepared than we have ever been, and I feel much stronger.

As we are discussing buying a house to get out of our 2nd floor apartment, we are taking into account all the information we learned about home improvements, so that we can make a decision that our family can work with as we go through the years with Emily. We have ideas of what equipment would be good for her as well as a much better idea of potential problems, and they’re warning signs, that we need to watch out for so that she doesn’t regress.

For now, we are seizure free, but we know what to look for in case it starts to happen. For 3 years, we have been told to watch for them, but not told what to watch out for.

Having never been around epilepsy, I didn’t know the warning signs, and would have missed many of the early signals that I have been told about.
The sense of camaraderie that I found, and seeing that many of the other families have been through some of the same issues that we have fills my heart. My only hope is that in the future, we can continue to learn and grow as parents, and that I can give back to others.

For the first time, Emily also got to be around others with HPE. She made so many new friends, and we know she is missing them. When we show her pictures being posted online by various moms, she reaches for them and gives them kisses.

It was so heartwarming to see her around other kids and getting to play and even talk. I just would just about swear that all the HPE kids just have their own language. She had several conversations with various other kids and they all seemed to understand each other in ways we as parents couldn’t.

In some ways, I wish we could do this more than just once every two years.

On a final note, my new friend Dan Stauft told me (and several others) that the work he and Heather do with Families For Hope was their sons Legacy. They have done an amazing job.

Dan taught me so much, and I will always be grateful for him. The conversations we shared have changed my perspective on a lot of things, and I am working on making the changes I need to in order to be the best Dad, and husband that I can be.

I also realized that if my families struggles meant anything, I had to make something good come out of it.

Now, I am sharing my story with others. My mission is to help people deal with the struggles life throws their way while raising a disabled child.
This renewed energy and focus is all because of the experiences my family and I had at the 2016 Families for HoPE Conference.

You truly have given my family HOPE and I cannot express how grateful I am enough. As I finish this, there are tears running down my face. I love all my HoPE family, and wish you all the best.

August 13 – Racing for HoPE 2016

Kara Pettett, Valparaiso, Indiana