Always Remembered

As we approach the 2018 Family Conference on Holoprosencephaly, we want to share with you how we will honor and remember those we love who have passed away with HPE.

As you may know, at each of our past family conferences on HPE, we have had a memorial balloon release. The balloon releases are lovely and special for all of those involved, but we also want to be mindful of our environment and the harm that releasing hundreds of balloons can cause to wildlife.

Instead of a balloon release, all in attendance will blow bubbles into the air in memory and celebration of the children who are no longer physically with us.  This is why our new logo is shaped like a bubble.  Do you see it?

Bubbles

In addition to blowing bubbles, it is 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 loved ones, so our conference agenda will include “Memorial Ceremony and Reading of the Names”.

boardIt is also our desire to create a physical memorial that is tangible and lasting, so we commissioned a special board from which will hang the names of each individual who has passed away with HPE.  This memorial board will be on display at our conferences and will be incorporated into our memorial ceremony.  When the conference is not in session, the board with its names 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 never be a reason to add additional names to the board.)

We want to ensure that no names have been overlooked, so please view the photos (grouped according to the first letter of the child’s first name) and let us know if your child’s name should be added to the memorial.  You may submit his/her name using our online form or by sending an email message to Roxanne.Steele@FamiliesforHoPE.org. 

Thank you for your support of this special project.

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Register by May 1

May 1 is the deadline to register for the 2018 Family Conference on Holoprosencephaly.
If you still need to register or you have registered but need to modify your registration, CLICK HERE

If you have any questions, please contact Leslie Harley at Leslie.Harley@FamiliesforHoPE.org.

2018 Conference Update

We are pleased to announce that author Christopher de Vinck will be our keynote speaker at the 2018 Family Conference on Holoprosencephaly. Mr. de Vinck is a nationally-recognized freelance writer and the author of 12 published books, including The Power of the Powerless: A Brother’s Legacy of Love.
 
https://smile.amazon.com/Christopher-De-Vinck/e/B001HMSQJW/ref=dp_byline_cont_book_1
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Sponsorship Opportunities Available

Dear Friends,

The Family Conference on Holoprosencephaly is the only conference in existence focusing on the topic of HPE, and this conference continues to be a model among rare disorders in that it brings 100+ affected families together with leading research scientists and clinicians. Attendees representing multiple countries come together to focus on daily living skills, medical needs and scientific research progress.  Your sponsorship of this remarkable event will have a lasting impact on bringing hope to the lives of the children and families who attend this conference.

For these families, this event is more than just a conference. It is the pinnacle in their journeys of HoPE; it is their symbolic Mount Everest. The medical community at large receives minimal clinical education about HPE, so parents become the “experts” in HPE. This conference further empowers them with increased knowledge and understanding of the science behind the diagnosis; yet, also addresses the hope that exists beyond the heartbreak.

We are seeking sponsors for the 2018 Family Conference on HPE.  To request a copy of our sponsorship proposal, please contact me at Josh@FamiliesforHoPE.org or Leslie Harley at Leslie@FamiliesforHoPE.org.

With HoPE,

Josh Timmerman
President of the Board of Directors
Families for HoPE, Inc.
317-774-8236

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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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