One of our HPE families worked with a Massachusetts legislator to make today Holoprosencephaly Awareness Day. As we count our blessings today, we celebrate our special children and the families who work day-in and day-out to bring HoPE to our families, our communities, and our world.
Halloween can be a challenge for parents, and there are so many uncertainties that we face.
Even with the challenges, we push forward, we make plans, and we create great memories with our children. And sometimes, our kids end up with the best costumes in the neighborhood!
Do you have a Halloween memory you would like to share? If so, please comment below and share your memory. If you would like to share a photo of your child in a costume, please send the photo to info@FamiliesforHoPE.org.
Everyone have fun, stay safe, and don’t go to bed with a tummy ache!
It only takes one look at the smile on 3 year-old Maeve Tierney’s face to see that she’s full of sweetness, and apparently, that’s a family trait. Maeve’s 8 year-old cousin, Cece recently used sweet treats to help raise funds and raise awareness of HPE.
At Craneville Elementary School in Dalton, Massachusetts, Cece’s third-grade teacher gave $5 to each of the students and challenged the students to make that $5 “grow”. Each child was allowed to choose his or her own method of growing the $5, and each was required to select an organization he or she felt strongly about supporting with the earnings.
Inspired by Maeve, Cece chose Families for HoPE as her charity, and she invested her $5 in supplies to make brownies and muffins. Once she had the product ready and her marketing plan in place, Cece set up shop outside of her grandfather’s business, with HoPE for a profitable bake sale. Priced at $1 per sweet treat, Cece grew her $5 into $43.00!
A bake sale is a great way for kids to help raise funds and raise awareness for HPE. Other ideas for kid-friendly activities include:
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, “Boy, that was some game we watched last night.”
“Some 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“.
While you are reading HoPE, you may notice I say things like, “The child with HPE” or “The adult with HPE.” This may sound kind of wordy and repetitive, but there is a reason for it! You won’t hear me say, “The HPE girl” or “The HPE teenager.” Here’s why…
Have you ever heard someone say, “He’s an Autistic kid” or “You know, the Down Syndrome girl.” Or in the HPE community, you may hear, “The little HPE boy.” You may not realize it, but this is offensive to some people with special needs and their families. Some of you may be thinking, wait a minute- I have a child with HPE/special needs, and I don’t find this offensive. I didn’t even know there was anything wrong with it! Please, let me explain…
In the world of special needs, there is a phrase called, ‘People-first language.’ I was first introduced to this term, while pursuing my Bachelor’s Degree in Special Education. People-first language is exactly what the phrase says… putting people first! In this case, it’s putting the person with special needs first, with their disability second. When you say, “The Autistic kid” or “The HPE girl” it’s almost like you are dehumanizing that person, or defining them by their disability. This made sense to me as a teacher of children with special needs, and it makes perfect sense to me now, as a mother of a child with special needs!
From a personal perspective, when I introduce my daughter to someone new, I want them to see Abby. Not HPE Abby! Abby is a beautiful girl, just like all of the other children with or without HPE/special needs. This is how I want the world to see her! I don’t want the world to look at her and see her HPE. Yes, HPE is a part of Abby and that’s why we are all here, but she is a person, before her HPE!
So, there you have it… the explanation as to why I may come across as wordy when speaking of our kiddo’s with HPE, but there’s a good reason behind it! Please, keep this in consideration as you speak of people with disabilities. 🙂
Thanks for stopping by HoPE! Don’t forget to scroll down the page, to read HoPE’s first entries! Here’s a sneak peek at what you can expect to see on HoPE, in the near future…
~Child of HoPE: We will be regularly featuring a child/adult with HPE! The purpose of this entry is to give more insight into the life of a child/adult living with HPE. Of course, you can go to HoPE’s Blogroll anytime, and learn more about any of the kiddo’s with HPE, by clicking on the link to their webpage/blog!
~ Getting into the groove: HoPE will be featuring a new series about music! Music often helps us get through different phases in our lives. We want to know what kind of music HPE families listen to, as they experience different moods. We want to help create a playlist for different moods/themes! We are seeking songs for encouragement; songs about motherhood; songs to make you feel happy; songs when you feel reflective; songs to help you cry; songs about determination.
~ HoPE around the World: There are a number of HPE families living in the United States, but there are also several HPE families living around the world. We plan on featuring these children and their countries!
~Perspectives: HPE families experience different phases. These phases include prenatally living with HPE, having an infant/toddler with HPE, having an elementary-aged child with HPE, having a teenager with HPE, having an adult with HPE, and having an angel with HPE. We think it would be interesting to hear different perspectives from all of these phases, and share them with our readers. We are accepting admissions now!
~Guest Authors: There are several blogs and webpages written and maintained by HPE families. (You can view these under the HoPE Blogroll.) With so many writers and bloggers in the HPE community, we want to invite those individuals to submit entries to HoPE, as this blog is for everyone! If you are interested in submitting an entry to HoPE, let us know!
~HPE Gear: It’s that time of the year again…Fall! In the HPE community, that means it’s fundraising time for FFH (Families for HoPE!) This year’s fundraising efforts are in the works, and we will soon be bringing you info on how to purchase your HPE gear!!
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?
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!!
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!
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.