I need to warn you that it’s contagious…

As a parent of a child with complex medical needs and the potential for recurring hospitalizations, the very last phrase we want to hear is, “it’s contagious”; however, when it comes to laughter, being contagious is welcomed and encouraged.  Laughter is good medicine for a stressed-out, sleep deprived parent.

When we laugh, we trigger the release of endorphins and serotonin—the feel good hormones that create the feelings of euphoria, love and happiness.  As well as triggering endorphins, laughter also suppresses stress-related hormones in the brain, relaxes muscles, enhances respiration and circulation, and even oxygenates our blood, which allows us to think more clearly.

Throughout my son Sammy’s life, we laughed a lot.  We said silly things, made silly faces, and sang silly songs.  Sammy experienced seizures, and it seems ironic to me that even some of Sammy’s seizures presented as smiles and chuckles.  His signature photo that puts a smile on everyone’s face…that big smile was a seizure.

Six weeks after Sammy passed away, I was invited to a girls’ weekend.  The girls were three other women who had also experienced the death of a child—two were HPE moms and one was the mother of a young man who passed after a life-long battle with cystic fibrosis.  One of the ladies rented a log cabin for the weekend, and we made plans to meet there on a Friday evening.

We all brought scrapbooks and photos of our kids, and for the first few hours, we looked at pictures and shared stories about our kids’ lives and our experiences.  There were a few tears at first, but after a while, there was laughter…lots and lots of laughter.  The kind of laughter that is contagious; the kind that makes your abdominal muscles get a good workout; the kind that makes you run to the bathroom for fear that you might wet your pants.

The few days I spent secluded in a log cabin with those grieving moms confirmed to me that there was still HoPE even in the midst of my mourning.  I had been infected with contagious laughter, and it was good medicine to my soul.

Do you need some infectious and contagious laughter today?

Sweet Sixteen!

Oh, how sweet it is! We had two teenagers with HPE turn 16 this week! This is quite an accomplishment for two girls who were given very little HoPE at birth. Way to go, Dakota and Leanna!! You are an inspiration! Happy Sweet 16th!!

Why HoPE?

You may be wondering to yourself, why does the HPE community use the term, HoPE?? If you look at the ‘What is HPE’  page, you will see the statistics and prognosis for HPE are somewhat grim. The HPE community has adopted the ‘HoPE’ term, as a reminder to never lose hope. Sadly, hope for HPE is nearly nonexistent in the medical community, but in reality, infants and children with HPE are surpassing the statistics–there are individuals diagnosed with HPE who are now living into their teens and twenties! A diagnosis of HPE is heartbreaking, and the statistics on HPE are devastating; however, the courage and determination of infants and children with HPE and their families are truly inspirational.

The actual term, HoPE, was developed several years ago. While addressing the audience at the 1st NIH Conference on Holoprosencephaly in 2000, Dr. Francis Collins, Director of the National Human Genome Research Institute, noted that HPE is one letter short of spelling “hope”.  He challenged his audience to be the “O” team and find the missing letter needed to change HPE into HoPE.  Thus, HoPE was born!!

As you will see on this blog, the term, HoPE, is still going strong! We are looking forward to sharing the HoPE in Holoprosencephaly with all of our readers!

What is HPE?

HPE is briefly discussed in our ‘About’ section, but if you are new to this term, you may find yourself wanting to know more! Well, look no further, because we have an explanation for you!

Ho•lo•pros•en•ceph•a•ly \ho-lo-PROS-en-sef-a-le\ is a congenital brain disorder caused by a failure of an embryo’s forebrain to divide to form bilateral cerebral hemispheres (the left and right halves of the brain), causing defects in the development of the face and in brain structure and function.  According to the Carter Centers for Brain Research in Holoprosencephaly and Related Malformations, “It is estimated that HPE affects between 1 in 5,000-10,000 live births. Since many pregnancies with a fetus diagnosed with HPE end in miscarriage, the frequency of HPE among all pregnancies may be as high as 1 in 200-250. Current studies indicate that only 3% of all fetuses with HPE survive to delivery and the vast majority of these infants do not survive past the first six months of life.”

HPE is a condition without a cure or a standard course of treatment.  Treatment for HPE is symptomatic and supportive.  Individuals with HPE can also have secondary conditions such as mental retardation, epilepsy, diabetes insipidus, pituitary and hormone disorders, movement disorders, gastroesophageal reflux, respiratory disorders, and hydrocephalus.

Welcome!

Welcome to HoPE, a blog about sharing the HoPE in Holoprosencephaly! On this blog, you will find entries and stories related to this rare brain condition, also known as HPE.  We plan on bringing you a broad range of entries from informative pieces to most importantly, inspiring stories of HoPE!

HoPE is brought to you by a couple of HPE mommies.  The blog is maintained by Carly and Leslie, but will also feature guest authors, as well! If you have a HPE blog or webpage, please let us know, so we can add it to the HoPE Blogroll!

HoPE is intended for anyone interested in HPE, and most of all, families prenatally diagnosed with a child with HPE, families of children living with HPE, and families of children with HPE angels. If you are a newcomer, please check out the HoPE links on the right side of the main page. There are several resources to help you get started with your HPE journey. If you have already started your HPE journey, we HoPE you will find this blog to be a welcoming, informative, and fun place to read about all things HPE!

~Carly & Leslie

2010 Family Conference on Holoprosencephaly

2008 Family Conference on HPE – Indianapolis, Indiana

2006 HPE Family Conference

Flackback Friday – April 2006

HPE Family Weekend and Conference

Indianapolis, Indiana, USA
April 21-23, 2006

Co-sponsored by Families for HoPE, Inc.
and
the Carter Centers at Kennedy Krieger Institute

The Highlights

The HPE Family Weekend & Conference, co-sponsored by Families for HoPE and the Carter Center at Kennedy Krieger Institute, was truly a weekend to remember! Friendships were created, lives were celebrated, and HoPE was abundant. Here’s a special report on a few of the highlights from the event.

Up, up and away . . .

On Friday evening, April 21, travelers on West 86th Street in Indianapolis were distracted by 130 helium balloons ascending toward the heavens, from the courtyard of the Marten House Hotel and Conference Center, in honor and memory of infants and children who had passed away due to complications of HPE. Their lives were remembered as family members and friends released a balloon tagged with their identifying information. To date, we know that Anysia’s balloon was found in Lima, Ohio and the string and tag of Harrison’s balloon were found near a pond outside of Buffalo, New York, where mysteriously, a frog was also discovered hopping about!

Welcome to Indy

For many of the 26 families in attendance, this was their first visit to Indianapolis, so it needed to be extra special. Inspired by children’s book Twelve More Little Race Cars by Scott and Judy Pruett, a racing theme was chosen for the kick-off dinner. The highlight of the evening was each family’s moment in the “HoPE Raceway Winner’s Circle”. Each of the children diagnosed with HPE is a winner, and at HoPE Raceway all winners were presented with a trophy declaring him/her a “Champion of HoPE” as they sat behind the wheel of a custom-designed race car (wheelchair accessible, of course) bearing the names and logos of all of the corporate sponsors of the event.

What would a victory speech be without thanking those who made the victory so sweet? Special thanks to Indianapolis Motor Speedway Corporation, Tony Stewart Foundation, Women’s Auxiliary of Motorsports, Hendrick Motorsports, Party Time Rental, and Build-A-Bear Workshop. Personal thanks to Joey Arnold, Myrian and Keith Wiggins, Judy and Scott Pruett, Cheryl Riley and especially to Debbie and Bruce Timmerman for realizing the vision and making the racecar a reality.

Gentlemen, start your engines!

A group of dads and grand-dads descended on the Indianapolis Motor Speedway for “Rookie Orientation” on Saturday morning. The excited wanna-be racers were shuttled to the track by driver Ron Clark aboard a bus provided by Traders Point Christian Church. Upon arrival, the rookies’ excitement reached a fever pitch as they were greeted by the sound of roaring engines from the Richard Petty Drivers’ Experience session in progress. With the adrenalin still flowing, the racers visited the IMS Hall of Fame Museum where they learned about the history of “The Greatest Spectacle in Racing”. Each rookie could only imagine how the legendary Ray Harroun, Dan Weldon, Jeff Gordon and Tony Stewart felt as they climed the fence, took the checkered flag, kissed the yard of bricks and took the ceremonial swig of milk! After all that stimulation, the racers made a pit stop at the museum gift shop to pick up a few souvenirs. Track officials confirmed that a good time was had by all!

Meanwhile, back at the hotel . . .

The moms and grandmothers spent the morning being creative with a scrapbooking activity led by volunteer Kayce Auman. The ladies also participated in a beaded bracelet project designed in “assembly line style” so that every bracelet created would have beads placed on it by the hands of each person in the room. These bracelets would serve as a symbol of HoPE and a constant reminder that “We’re all in this journey together!” Special thanks to Danielle Tooley for donating the beads and wire for this project.

While the moms were occupied with their projects, the children were having fun too. The girls ages 6 and up, participated in a flip-flop decorating activity led by volunteer Anne Lennon of Sally Huss Gallery. All of the girls were quite fashionable at the pool with their newly-decorated flip-flops! The boys ages 6 and up were a busy group as they participated in a scavenger hunt supervised by volunteers Phil Parelius and Rob, Jan, and Nick Meyers.

Other activities also included singing, dancing, playtime, story time and a craft project. In the afternoon, there was a visit from several service dogs affiliated with the nonprofit organization, Canine Companions; also, the siblings participated in SibShops, workshops intended to celebrate the siblings of disabled children, conducted by a group from Easter Seals Crossroads.

Taking a parade lap on a “Holiday” weekend!

The theme selected for Saturday night’s events was appropriately titled “Merry Happy Holidays”. Many of the families and children with HPE have celebrated at least one holiday within the confines of a hospital room. A few of them can no longer count their in-hospital holidays on just one hand. In appreciation of all holidays—past, present and future—each family celebrated the special days of every season all in one night, and no one had a passing thought of the hospital!

Each child presented in costume and participated in a colorful parade winding from their rooms to the hotel ballroom where the evening’s festivities commenced. It was quite a sight to behold as superheroes, princesses, firemen, clowns, and various other characters marched their way into the hearts of the observers along the parade route!

Inside the ballroom, the children collected treats and favors in bags they had decorated earlier, from each table pertaining to the various holidays.

After dinner, thanks to the in-kind donations of many individuals and corporations, no one left the ballroom empty-handed as the door prizes were generous and abundant. Of particular note were in-kind donations from Rifton Equipment (bath seat), AdaptiveMall.com (feeder seat), and Enabling Devices (adapted toys and switches). Several children were able to immediately benefit from the donation of these items which can often be very expensive and difficult to obtain through health insurance plans.

Parting is such sweet sorrow . . .

After a night of sleep, all of the families gathered one final time for breakfast on Sunday morning. It was a time for exchanging contact information, taking photos, and sharing hugs and handshakes to reinforce the new friendships made over the course of the weekend. Even though some felt weary on an early Sunday morning following a very busy weekend, there was a spirit and enthusiasm beginning to fill the air. Not only had the families connected with other families so similar to their own, they were discovering a renewed sense of HoPE.