HPE Awareness Week

HPE Awareness 2018

Buzzer Beaters

Buzzer Beaters.

GAMES ARE WON WITH BUZZER BEATERS! This is the best way to keep our opponents guessing…and ensure we make it to the next round.

When checking out, select the “Buzzer Beater” option. When you choose this, your donation will be doubled, with half posting at the time of checkout and the remaining half posting just after the final buzzer on Friday at 8PM EST

Click here to enter those Buzzer Beaters!

Do we have MATCH for YOU!

Oh boy, do we have a match for you!

A generous donor has contacted us this morning, and he wants YOU to join him on #TeamHoPE to score points for Families for HoPE.

#bfgindy

For every individual who donates $25 (or more) TODAY, he will contribute $25. Your 25 points will double to 50 points, and every point counts!

Take advantage of this opportunity to get 25 matching points

just by giving.

Click here to DONATE

New Friends

Our conferences are referred to as the Family Conference on Holoprosencephaly because it really is about the entire family.  The siblings of our special children are encouraged to attend our conferences, and we have special activities to help make them feel celebrated and an important part of our HPE family.

At the end of the 2016 conference, 11 year-old Dalton (big brother to Teagan with HPE) told his mom Keisha, “No matter where the next conference is, we have to go!  This is the most fun I think I have ever had.  One of the best times I’ve ever had.

Dalton told her that “making friends with Nick” was his favorite part of the conference. Nick who was 19 years old at the time of the conference is a favorite of many with his huge smile and generous hugs. While Nick may be described by some to be the strong, silent type, Dalton listened with his ears and with his heart to hear the language of friendship.

Being around other families who were like his own family and being with kids like Teagan and Nick made Dalton feel happy, he said.

To know that Dalton was able to create a lasting memory of our conference and wants to make that journey again, that means the world to us!

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

Having HoPE will give you courage

Guest Author:  Stephanie Stavnem

It’s been nearly three and half years since I found out I was pregnant with Kaiden.  I was initially stunned and scared.  I was not scared because I was only 22 and working at Walmart with no college education.  I was not scared because I was still in a new relationship with the father.  I was scared because I have Treacher Collins Syndrome, a syndrome where you are born with underdeveloped facial bones and deformed ears that come with lack of hearing.  A syndrome where I have a 50% chance of passing it down to my own child, a 50% chance of my child getting ridiculed growing up.

Treacher Collins is not life threatening if there’s proper management.  Many children born with Treacher Collins are born with a recessed jaw, which complicates the airway. Therefore, it was important to have specialists on this journey with me to provide Kaiden the best care possible, if needed.

I’ll admit, I don’t like surprises.  I felt my knowledge and experience with my syndrome provided me the advantage to be prepared.  At my 20-week ultrasound, I had an amniocentesis done to confirm if I had passed down the mutation to Kaiden.  In those next four weeks, I would have found that he indeed did have the mutation.  However, something happened in between those four weeks that was so significant, that the weight of my child having Treacher Collins was not as heavy as I imagined it would be.

I was scheduled to come back for an ultrasound at 23 weeks because Kaiden was being stubborn and wouldn’t show them his heart.  The ultrasound technician pointed out his 4 chambers and the valves working in sync.  She then looked at his brain and the room got very quiet.  After a few minutes, she told me she would bring the doctor in.  We waited a good 10 minutes, which felt like hours, before the doctor came in and started telling me how Kaiden has a brain disorder.  My whole world started crashing down on me at that point, and I could only hear a few words that he was spewing out.  “Mental retardation”, “grave prognosis”, “termination is an option”.  I got out of there as quick as I could without asking any questions.  I left feeling like a failure.

In those next few weeks, I couldn’t tell you how many times I typed “Holoprosencephaly” in my Google search engine.  The more articles I read on HPE, the more hopeless I got.  Eventually I reached the point in my pregnancy where I had to see my midwife every 1-2 weeks.  Each time I went, they felt it was appropriate to send in a “specialist” to explain Kaiden’s prognosis and the chances, or lack thereof, of him living.  I would come home feeling defeated and alone because the doctors were preparing to deliver a dead baby, not a living one.

The last few weeks of my pregnancy, my C-section got scheduled and a plan was being made.  The specialist who would deliver Kaiden was on my side as he made sure there would be an ENT in the OR in case Kaiden’s airway was compromised.  The last time I saw my midwife before I would deliver Kaiden, she said, “I love that you are being so optimistic. How do you do it?”  It was simple.  I have stated how I felt hopeless, defeated, and like I had already failed Kaiden.  Each time, Kaiden would give me a good kick in the ribs, and I genuinely felt like this was his way of saying, “Hey mom.  I’m here, I’m strong, and I will fight”.

When the day came and Kaiden finally arrived, he came out fighting.  He immediately had to be intubated when the ENT discovered that he had bilateral choanal atresia (blockage of the nostrils) and couldn’t breathe out of his nose.  Nurses had to put socks on his hands because he tried to pull out the tube.  Kaiden spent 5 weeks in the NICU and during his stay there, he had a g-tube placed and a tracheostomy.  He had an MRI done to confirm that he had semi-lobar Holoprosencephaly as well.  He got to come home the day before Valentine’s day and it was the greatest gift I could ask for.

These last couple of years haven’t been the easiest, but I don’t take anything for granted.  Kaiden sees about a dozen different specialists and has therapy every day of the week, but we have been extremely fortunate.  Kaiden has changed my life in ways I didn’t think was possible.  He has inspired me to go to school and get a degree in nursing.  He has inspired me to embrace my syndrome.  I’ve been called a monster for bringing Kaiden into this world and passing down my mutation.  However, his smile and laughter that I see every day proves that he is not a child suffering, he is a child who loves.  Kaiden will forever be my greatest lesson in life.

Pearl Joy Brown

Last week, Pearl Joy Brown’s dad, Eric Brown, was asked to speak at a conference in Washington, DC.  Thank you, Eric, for sharing your humble spirit, your sincere and heartfelt words, and your beautiful photos.

There is always HoPE

By Amy L. Springer, Guest Author

I learned that I was pregnant February 24, 1994. I had a sonogram like normal and all was good. I later started to have problems with bleeding, so we did another sonogram, which showed the baby to have a “lemon-shaped head” and I had placenta previa so a follow up sonogram was ordered. That sonogram showed that the placenta had moved and nothing more was said about her head. Then on November 3, 1994, I gave birth to a beautiful baby girl that I named Marina Kay Springer. Her first week at home she had to be on a billiruben light. She was diagnosed in May of 1995 with gastroesphageal reflux and put on two medications. Because Marina was so tiny and not gaining much weight, every time she got sick, she would be really sick and end up in the hospital for about 5 days.

When Marina was about 12 months old, she wasn’t sitting up yet or even close to walking, so our primary care physician sent her to the Capper Foundation for PT and OT. At her 15 month check up, her doctor decided that things still didn’t seem quite right; however, he didn’t think anything was wrong with her, but to rule it out, he sent us to a neurologist.

On April 18, 1996, I received my life-changing news…and i was alone. He first showed me a normal MRI, and then showed me Marina’s. I was speechless. How could this little girl who seemed so normal be missing so much of her brain and still function? I believe, her neurologist was just as shocked as I was. He told me that her brain was built wrong and that there was no cure. She would need a lot of PT/OT/speech therapy and special education her whole life. He told me we had to treat her individually, that she is much better than most children with the same diagnosis. He also told me that had they looked further into the sonogram that showed the “lemon-shaped” head, they would have found out that I was carrying a baby with HPE, and they would have given me a very grim outlook and probably recommended an abortion because these babies rarely survive birth or past 3 years old. He then ordered many tests, set up several appointments and had us go do blood work. When I left his office, got into my car the song on the radio was Ten Thousand Angels! I just sat there and cried.  I lost it.  I had no idea what I was going to be facing and was terrified of losing her.

All her tests came back normal, including her genetic tests. The only one abnormal was her EEG. Up to that point, she had not had a seizure. I think she was about 2 when she had her first one, and me being a nurse you would think I would be able to handle it, but in that moment, I was a mom who was afraid for her child. I had divorced my kids’ dad when my son was 5 and Marina was 2 1/2 years old, so once again, I was alone during her first seizure.

Marina also has bi neural hearing loss and wears hearing aides. She also received growth hormone injections, had thyroid problems, and also developed scoliosis.

She has defied all odds against her! She can walk, but not run.  She can write her first name and spell simple words as well as read some simple words. She has NO problem with her speech at all, and in fact, now that she is a teenager she has become even more bullheaded than before; however she is hard to understand. She has no concept of time at all. She is very OCD and so needs to stay on a regular structured schedule. She is also stubborn as a mule. She will do things her way in her own time–like walking, we tried and tried to get her to walk and finally called in a specialist and that very day she took off walking down the hall.  She was almost 3 years old. Her legs rotate to the left from the hip and has the flattest feet I have ever seen which makes walking long distances difficult.

Marina is now 23 years old and has since been on a Make a Wish trip around her 16th birthday and participated in a study for adults with HPE at the NIH in Maryland. She does continue to get sick frequently but is still the happiest little girl you can meet. She had some GI issues which landed her in the ER a few times and her GI doctor did a scope on her. She is now on medication to treat that issue which was related to her bowels not emptying. She also completed high school in the over-18 program and got her diploma when she finished school after she turned 21. About 2 years ago, she was also diagnosed with a REM disorder and increased seizure activity during sleep so more meds were prescribed and diagnoed with sleep apnea so she is on a CPAP machine at night. Other than that, all is the same and I would say she is doing very well overall.

Marina has brought so much joy and happiness into my life, I couldn’t imagine not having her. So to all those new moms or soon to be moms that are told their child has this, remember that the doctors are NOT always right. My daughter is a prime example.

She may have changed my life that day back in April of 1996, but it was for the good; I just didn’t know it then. And i wouldn’t change her for the world! So trust me, there is HoPE!

Halloween Costume Contest

Families for HoPE is hosting a Halloween Costume!!

Vote for your favorite one!

Grand Prize

The photo receiving the most votes wins the grand prize of a Visa Gift Card in the amount of $250 or a credit of $250 toward registration fees for the 2018 Family Conference on Holoprosencephaly to be held June 10-14 in Cincinnati, Ohio.

2nd Place

2nd place will be awarded a Visa Gift Card in the amount of $100 or a credit of $100 toward registration fees for the 2018 Family Conference on Holoprosencephaly to be held June 10-14 in Cincinnati, Ohio.

3rd Place

3rd place will be awarded a Visa Gift Card in the amount of $50 or a credit of $50 toward registration fees for the 2018 Family Conference on Holoprosencephaly to be held June 10-14 in Cincinnati, Ohio.

https://www.gogophotocontest.com/familiesforhope

Registration is open!

Click here to visit the event website and register to attend the 2018 Family Conference on Holoprosencephaly!

 
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2018 Families for HoPE Conference 

Families for HoPE, Inc. would like you to “Save the Date” for the 2018 Family Conference on Holoprosencephaly to be held at the Great Wolf Lodge and Conference Center in Cincinnati/Mason, Ohio. The conference will be held from check-in on Sunday, June 10 through check-out on Thursday, June 14. The conference is a collaboration between Families for HoPE, Inc. and the Carter Centers for Brain Research in Holoprosencephaly and Related Malformations. Additional details will be forthcoming over the next several weeks.

To share a little perspective on how we select a conference location, the planning and execution of our conferences is a huge endeavor involving months of preparation, countless volunteer hours, and nearly constant fundraising, among other factors. To be successful, it requires a dedicated team of individuals who lives/works in or near the host city with access to resources, volunteers, and a willingness to essentially serve as the hands and feet of our organization for a 12-18 month period of time. As we want every family to have an opportunity to attend, the most challenging part of our conference planning is the fact that it is impossible to choose a location that will satisfy everyone. We must take into consideration a location that will be affordable for travel as to alleviate additional financial burdens to our HPE families, a facility that provides amenities for our group’s special needs and allows room for growth as each conference brings an increase in attendance.

As much as we would like to announce a location for the anticipated 2020 conference, further research and evaluation must occur to ensure all of the above factors are taken into careful consideration. For now, our immediate attention is on the 2018 conference to make it an affordable, fun, and a memorable experience for you and your family. We hope to see you in Cincinnati in June 2018!

 

The Board of Directors of Families for HoPE, Inc

Coloring

Coloring is a hot trend for adults, and gathering a group of individuals together to color is a unique way to raise awareness of HPE!  If you are interested in using coloring as a way to raise awareness of HPE and raise funds for Families for HoPE, we can help you do so.

pencilsIf you are willing to host an awareness coloring event/fundraiser in your community with 25 guests, Families for HoPE will provide you with the following favors to give to your guests:

25 sets of 12 colored pencils with built-in sharpener
25 HPE wristbands
25 latex balloons
25+brochures
2 HPE-themed t-shirts to use as door prizes

(Coloring pages will not be provided by Families for HoPE because we want to give you the flexibility to choose the coloring pages in themes that your guests would enjoy.)

This is a limited opportunity as we have only enough pencil sets for 6 individuals to host a coloring event/fundraiser.  We would suggest that you host your event in a church, school or community center and provide simple snacks, cookies, and punch to keep your costs low; however, it’s your event so be as creative as you wish.  A suggested fee per attendee would be $10-$15 per person, but you know your attendees, so we encourage you to designate a cost that is in keeping with what your guests are willing to pay based upon the event you’ve planned.

If you are interested in hosting a coloring event to raise awareness of HPE and raise funds for Families for HoPE, please contact Leslie Harley at Leslie@FamiliesforHoPE.org for more information.

Laughing Matters

I am often asked why I smile so much.  Often, these inquisitive ones are looking only at the difficulties in caring for a medically fragile child as a 24/7 job. I respond simply, “I can either cry about it or laugh about it; I choose laughter.”

Humans are social creatures, and humor is one of the greatest interactions we have that connects us to one another. We laugh in countless situations in countless settings, from family dinners to friendly get-togethers. Even when first meeting someone, a well-placed and proper joke does wonders in breaking the ice and paving the way to more casual interaction. Humor is fun, easy, usually free, and makes us feel comfortable being around one another in everyday social settings—something that is often overlooked when meeting a child with special needs.

Studies have shown that laughter really is medicinal. In fact, laughing is similar to exercising in that it works your core muscles and stimulates the cardiovascular and respiratory systems. When you have a good, hearty chuckle, your body increases endorphin levels and reduces stress hormones such as cortisol and adrenaline. Subsequently, your body’s stress responses diminish: blood pressure lowers, muscles relax, and mood improves. Not only will you feel refreshed after a good giggle fit with friends but that shared chuckle over the ridiculous demands of doctors, therapists and home lives also helps your immune system stay active.

I came across an acronym based on the word “LAUGH” to help folks remember how to find humor every day.

is for “LET GO” of whatever is angering or distressing you. Take a couple of deep breaths and recognize that you have the power to rise above whatever is bothering you. This enables you to become more aware of how you view a situation and to think about changing your attitude.


is for “ATTITUDE”. We can’t control what happens to us, but we can respond to our experiences with a positive attitude. The way we respond is more important than the actual events.


is for “YOU”, because only YOU can change your attitude or let go.


is for “GO DO IT”, or use what you find in the previous steps to give yourself a more positive and hopeful perspective.


is for “HUMOR EYES AND EARS”. Humor is all around us all the time, but we don’t always notice it. Look around and notice something you didn’t see before, like a bumper sticker, for example, that may make you laugh.

Now, get out there and use that humor of yours to laugh at all these lemons life inexplicably puts in your pockets.

 

A lasting memorial

As we approach Holoprosencephaly Awareness Week on March 27-April 2, we wanted to find a special and lasting way to memorialize all of our precious children who have passed away with HPE.

As you may know, at each of our Family Conferences on HPE we do a memorial balloon release, and each balloon carries a brief “love letter” addressed to each of the deceased children in our database. The balloon releases are lovely and special for all of those involved, but we want to do more.

Our desire is to conduct a memorial ceremony at the conferences where we can read the names of our children in tribute to the impact they have had on all our hearts. We have heard of an old Jewish proverb that says a person dies two deaths. The first is the physical death; the second is when that person’s name ceases to be used. We don’t want that to happen with our little ones.

Our desire also is to have a memorial that is tangible and lasting. We have commissioned a plaque to be hand-painted and personalized with the words “Families for HoPE” and “Always in our hearts”. From the plaque will hang small circles and upon each circle will be the first and last name of a child who has passed with HPE. All of the circles will hang down in rows with small s-shaped hooks. This will allow us to display the plaque at our conferences, and during the memorial ceremony, we envision reading each child’s name aloud and then re-hanging each child’s circle on the plaque after it has been read.

When the conference is not in session, the plaque with its circles will be on display in the Families for HoPE corporate office and names will be added when necessary. (Although we sincerely desire that there would be no need to ever add a new name to the plaque.)

The names of all of the deceased children in our database will be added to the plaque, but if you would like to contribute to the creation and maintenance of the memorial plaque in memory of your child or in memory of a deceased HPE child who has touched your heart, please click “Donate Now” and complete the Tribute section in memory of that child.

As soon as the plaque is finished and displayed, we will be following up with photos allowing you to see the plaque in its finished state.

Thank you for your support of this special project.

Have Prom, Will Travel

On the final afternoon of the 2016 conference while the families were making preparations in anticipation for the long-anticipated HoPE Prom, Families for HoPE received word of a protest planned for 5pm in the vicinity of Dealey Plaza near where the Prom would be held that evening at the Dallas World Aquarium. With rumored threats and the potential for violence, our Families for HoPE leaders made the decision to move our HoPE Prom to a safer location.

img_2508This was all made possible by Kristy Rempel (Liam’s mom) who lives in the Dallas area and works on the event planning team at Toyota Stadium in Frisco, Texas. Along with Kelly Irvin (Ryker’s mom), Kristy served as co-chairwoman of the Prom committee, and these two HPE moms orchestrated the last-minute transition of the food and catering team, the DJ and the photographer who had all begun on-site preparations at the aquarium. The conference committee members communicated with each family, and within the hour nearly 400 Prom guests were making their way to the new Prom location!

img_2625When the HPE families arrived at Toyota Stadium, they didn’t mind that there were no spectacular aquarium exhibits or fancy centerpieces on their tables; instead, everyone was excited and jubilant just to be there for that special moment of celebration and hope! This is the definition of the journey of HPE——life may not be the perfection that we once dreamt it to be, but we can find hope and celebrate wherever the journey takes us.

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