The start of Inclusion

Martin Luther King, Jr., Day, in the United States, holiday (third Monday in January) honouring the achievements of Martin Luther King, Jr. A Baptist minister who advocated the use of nonviolent means to end racial segregation, he first came to national prominence during a bus boycott by African Americans in Montgomery, Alabama, in 1955. He founded the Southern Christian Leadership Conference in 1957 and led the 1963 March on Washington. The most influential of African American civil rights leaders during the 1960s, he was instrumental in the passage of the Civil Rights Act of 1964, which outlawed discrimination in public accommodations, facilities, and employment, and the Voting Rights Act of 1965. King was awarded the Nobel Prize for Peace in 1964. He was assassinated on April 4, 1968.

Legislation signed in 1983 marked the birthday of the Rev. Dr. Martin Luther King, Jr. as a federal holiday. In 1994, Congress designated the Martin Luther King Jr. Federal Holiday as a national day of service and charged the Corporation for National and Community Service (CNCS), the federal agency that leads service and volunteering, with leading this effort. Each year, on the third Monday in January, the MLK Day of Service is observed as a “day on, not a day off.” MLK Day of Service is intended to empower individuals, strengthen communities, bridge barriers, create solutions to social problems, and move us closer to Dr. King’s vision of a “Beloved Community.”

What is inclusion?

• All children can learn

• All children can attend age appropriate educational classes in local schools

• All children can receive appropriate education

• All children receive a curriculum/extra curricular activities that meet needs

• All children benefit from collaboration

Inclusion is the educational practice of educating children with disabilities in classrooms with children without disabilities.

Set the bar high, it’s ok to fail and not reach the bar, but it’s not ok to set the bar low and reach it and give up

NIH Study on Environmental Determinants of Holoprosencephaly

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 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 http://hope.ctss.nih.gov 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:

  1. Contact Yonit Addissie at yonit.addissie@nih.gov or 301-402-5812
  2. Then, go to http://hope.ctss.nih.gov

*There is no compensation for this study

#GivingTuesday

Want to join us in supporting a good cause? This #GivingTuesday We are raising money for Families for HoPE, Inc. and your contribution will make an impact,

Click on this link to donate:

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More children after HPE

By Abby Handy

It’s 2am, and I’m laying in bed wide awake with my baby girl sleeping half way on me. I can barely move and the hand I’m using to type this with is just about numb. But, there’s really no other way I’d have it.

If you would have asked me 14 years ago if I’d be a stay-at-home mom of 3 kids, I either would have laughed in your face or passed out in shock. Why is that? Well, 14 years ago I gave birth to my son, Eric Ryan. He was 1 lb 10 oz and if being a mega preemie wasn’t enough, we would soon find out he had Holoprosencephaly.

I was 23 years old and Ryan was my first pregnancy. The problems started early on. Severe morning, noon and night sickness along with back pains. I was constantly at the doctor’s office and even hospitalized during my first trimester. Put on bed rest early into my second trimester, no hint that anything medically wrong with him was ever mentioned. So laying in my hospital bed after waking up from my c-section, no baby in my room was heartbreaking. I didn’t see Ryan’s face to face until two days later because I wasn’t able to get out of bed. I could hear babies crying in other rooms and that longing for him was unbearable.

When I finally did see him I felt helpless, I was afraid to touch him, afraid to breath on him and there was no way of holding him. We couldn’t see his face with all the tape and tubes. He was so tiny, he didn’t look human. Scrubbing in, scrubbing out became our world. My recovery was slow and painful but that was all covered up and not spoken of because all focus was put on Ryan and getting him big and healthy enough to come home. We were encouraged to sign away our parental rights when he was 3 months old since and I quote “He is going to die soon anyway and we should move on with our lives.” But instead of listening to those doctors advice, we vowed he would always be surrounded by love, no matter how short his life was going to be. So with a binder full of instructions including Ryan’s daily medication & feeding routine, a calendar full of doctor and therapy appointments, a list of emergency numbers and supply companies, we headed home. Ryan was 4 months old. I don’t remember being nervous or scared, there was no room in the binder for that. I was numb and just followed the outline in the binder. We had a home nurse 8hrs a day, 5 days a week. Teaching me, grooming me and sometimes mothering me, but guiding me to be the best mommy nurse I could be. Daddy was working long hours and out of town on business a lot so my world was Ryan and all his hourly needs. We were in and out of the hospital but I knew that binder like the back of my hand. I could recite from memory all Ryan’s 20 plus medications, include how to spell them, dosages and times given. I knew all his upcoming appointments and nurse schedules. I was on it and in time I was that binder come to life! People would ask us if we were going to have another baby and I would laugh. There was no way I could fit another child into this life, into the binder! We hadn’t done any detailed genetic testing so that was a huge concern. But how would I do it day by day with another child and our busy schedule with Ryan?

Well 5 years later I would find out! What a difference 5yrs made in Ryan’s life. Yes, he still had all the same severe medical issues he was born with, but in time we figured them all out the best we could. He was on a new list of medications with new specialists and things were as “controlled” as they could be. We knew what Ryan’s signs were of sickness for the most part and his hospital stays were down to just a few a year. We managed his doctor and therapy appts so we weren’t out of the house 5 days a week. Ryan was even going to school on a regular bases! Something I never would have thought possible.

Pregnancy #2 started off about the same as Ryan’s with morning, noon and night sickness. But it wasn’t as severe and no major back pains. I was considered high risk because of Ryan’s prematurely and HPE, so we saw a specialist. I was on weekly progesterone shots and even had a cerclage followed by bed rest at some point. We new as early as possible that this baby boy, Dominic, was healthy and had no signs of HPE. We even received the genetic test results that had been done for free at the HPE Family Conference that there was no genetic link found, I was 6 mths pregnant at the time.

I went into labor at 36 weeks on the day of Ryan’s preschool graduation. I’ll never forget that day. I was at the out patient part of the hospital for a non-stress test and apparently, was in

labor. They wanted to admit me right away. The nurse called my dr because I was refusing and became an emotional mess. I told my doctor it might be the only graduation I got from Ryan and there was no way I was going to miss it! Besides, his school was full of nurses and even a paramedic would be there, I wasn’t worried about it! So with the promise to return straight after the ceremony, I drove myself in early labor to Ryan’s graduation. As promised we returned right after and I had my c-section a few hours later.

To hear my baby cry as he took his first breath in this world was so wonderful. But was quickly overcome by a sudden rush of fear, needing to be reassured he didn’t have any deformities. What was his birth weight? Why had he stopped crying? Laying there as they closed me up begging daddy for second by second updates. Just tell me his stats!!! The all to familiar feeling of helpless went away the moment daddy walked past the barrier sheet with tears in his eyes, holding our Dominic. Our perfect, healthy, beautiful Dominic.

We were rolled into the recovery room, Dom was placed on my bare chest and for the 1st time I got to breast fed my baby. I got to immediately bond with him and love on him. I got to hear how well he was doing, how perfectly normal everything was going. He got to come with me to my room and I didn’t take my eyes off him for a second. In those moments I was over come with joy and happiness.

The next morning as my new reality sank in, the guilt and sadness of all I missed out on with Ryan slowly sank in as well. This was something I could have never prepared for, this was not in the binder. I should have been basking in the glory of having a beautifully healthy baby, and I was, I really was extremely happy. But there is a such thing as being happy and sad all at the same time. I longed for Ryan once again as I had the day he was born. I just wanted to hold him & love on him and let him know that he was still my number 1. That just because he had another baby didn’t mean I was going to forget him or his needs. That I was the same dedicated mommy as I ever was. I felt guilty. Guilty for having another baby and guilty for what this would mean to Ryan and his care. Because what if I couldn’t handle it all? What if I couldn’t give Ryan the attention and care he needed, that he was used to? Would his health decline? Would he be sad? Would he feel as if he wasn’t enough, that I wasn’t there for him anymore? How was I going to handle having another baby?! What was I thinking?????!!!!!!

But I guess that’s kind of the point…I never “thought” too much about it all, I just did. I did what had to be done regardless of my feelings or really anyone else’s. I get asked a lot, “how do you do it?” My answer has always been, “ I just do.”

So after my mini internal meltdown, I decided I’d do as I always had. Taking it minute by minute, hour by hour, day by day. The day Ryan came home from the hospital I lost control to the binder and never truly got it back. It had worked for 5yrs so why change it now?

As we prepared to leave the hospital and the nurse had given our discharge orders, she asked if we had any questions. Mine was, “What do we do now?”. Her answer, “you go home and raise your baby”. What did she just say? We just go home? No daily, hour by hour schedule to follow? There won’t be a professional nurse waiting at my home to help me? Where the heck is my new binder?! Shock is an understatement.

We went home and began our new lives. My recovery was a lot easier and although Ryan showed signs of jealousy and not appreciating having to share me, like any 5yr old with a new sibling would, Dominic soon grew on him and a place I never knew was empty in our lives was filled. It wasn’t all easy. Me being able to go sleep by Ryan’s unpredictable sleeping pattern came to a crashing end and a new med was added to the list to help him sleep though the night. Ryan got his own room, with a big boy bed and decorations. After all, he’s a big brother now.

Life was definitely more complicated now. Figuring out how to push a wheelchair and hold a baby carrier was interesting. I was touched when people asked if I needed help but always refused in fear if I let one thing go, everything would come tumbling down.

Ryan had his 1st after brother hospital stay when Dominic was about 6mths old. Luckily my niece was living with us at the time so I was able to spend my days at the hospital and daddy took over nights. I gained a whole new fear during this stay. What if Ryan dies and Dom never knows him? Ryan is the center of our lives and for him to be gone and Dom to never know this,

was unfathomable to me. Thank God Ryan pulled through and it was only about a 2 week stay. But that thought was always in the back of my head.

Over the next few years, Ryan was in and out of the hospital and that was a norm for Dominic. He loved spending the night with us there and playing in the kids area. The staff was always so accommodating and never gave us issues for Dominic being there so much. We never really explained much to Dom, just that brother was sicky. Then about 3yrs ago, Ryan had to be rushed to the ER due to seizures. This was the worse cluster he had in years! Emergency med after emergency med was given with no end to them in sight. Dom was 6yrs old at the time, in the ER with us and was fully aware of what was going on. The staff tried to distract him while grandpa was on his way to pick him up. But Dom must of seen on my face that this time was different. For the 1st time in a long time I struggled to keep it in. I just kept thinking this might be it and it’s going to happen in front of Dom. As I stood there by Ryan’s bedside, Dom came beside me, hugged me and asked me, “Mom, is Ryan going to die?” I squeezed him tight, couldn’t even look at him and just said, “I don’t know baby. But I don’t want you to worry about that right now ok.” Holding back tears he said ok and went back to playing the video game they had brought him. Shortly after that, Dom left with grandpa and Ryan stabilized. I couldn’t help but think of my fear when Dom was 6mths old. The fear of Dom never knowing Ryan. But was this worse? Would Dom’s pain of loosing him be worse then my pain of him never knowing Ryan?

I guess that’s a question many of us with children after a severely disabled child will eventually have. Dominic is very mature for his age in many ways. Maybe it’s because he’s had to be living with a special needs sibling. He’s had to be more independent because mommy was sometimes too busy with Ryan’s care. Or maybe it was because we don’t hide the passing of Ryan’s special need friends from him and he knows one day it will be Ryan. Dominic isn’t the type of child who likes to talk about his feelings, he probably gets that from me. But he does know he can ask and talk to us about anything and we have never lied to him.

Now that Dominic is a big brother himself to our precious AvaJae. Life has once again changed. The guilt and sadness wasn’t so overwhelming as with Dom’s birth. But it definitely was there deep inside. I can honestly say life is complete with her being here. For years Dominic asked for a sibling “like me”. Meaning not special needs. “I love Ryan Mom, but I just want someone like me”. I completely understood and God granted him his wish. The bond he has with her already is undeniable. He’s such a great big brother and little big brother to Ryan. I try not to think about Ryan passing and what that would mean to Dominic or AvaJae. We still live minute by minute and hour by hour.

Overcoming Obstacles One Climb at a Time

By Ina Warrick

 

Our adventure into competitive competition climbing began on June 22, 2017 Keith Warrick stepped up to his first National Adaptive Climbing competition route. He had never competed in an adaptive climbing competition, never competed nationally and that was just the beginning of his journey into climbing as a competitor with goals set on a world championship.  He had been training for months (well he says it really isn’t training, more like hanging out with friends, friends who will cheer you on and friends who won’t hesitate to tell you are doing it wrong.

 

So, back track to Keith and his beginning. Keith was born with a serious heart condition which required heart surgery before he was even 24 hours old.   Keith has overcome life threatening medical issues from day 1.   As he got older we were informed that he had Klippel-feil syndrome and Lobar Holoprosencephaly. And while he has had many issues that have kept him from living out part of his dreams he has found even greater ones. He has faced those obstacles with God on his side and a passion for life. A life that has had its shares of ups and downs medically.  As his parents we were told that there would be things Keith would struggle with.  He would struggle to walk without an awkward gait, that he wouldn’t really ever be verbal due to severe speech issues except for those really close to him.  He has issues that even we still don’t understand the complexity of. But those issues don’t matter. Keith refuses to allow his disabilities to define him, he will define them. He has proved many people wrong, and has become a great friend to many. While he may have a speech impediment and struggles with learning issues directly related to his disabilities he lives his life with great joy and seeks adventure around every corner.

 

Keith had gotten his start climbing in of all places Recreation Unlimited. Keith attended Heart Camp through Nationwide Children’s Hospital.  His first weekend at Heart Camp, he fell in love with Recreation Unlimited and their climbing tower. That tower is massive and he climbed it. He also swung from a tree and that is where we feel his love for climbing began.  And of course Boy Scouts played a huge role too.  Keith also was involved with Boy Scouts. He went to summer camps and his favorite activity, climbing. He went to Red River Gorge where they climbed as a troop; he has been white water rafting too. He overcame many obstacles and eventually earned his Eagle Scout rank with the help of his family, especially his sister Beth who put up with a lot (she had to help deliver popcorn) and his Boy Scout Troop 355 of Marysville. 

 

Enter Vertical Adventures and their Adaptive Ascents program. A little over 3 years ago we heard of a new program starting at a climbing gym in Columbus through adaptive sports connection formerly known as TAASC (The Adaptive Adventure Sports Coalition). In case you haven’t heard of them, you need to check them out. We signed up to attend the free Adaptive climbing event they were holding and it was amazing. First of all it was free and for those of you not aware, many places especially adaptive events are never free.  Everyone at Vertical Adventures was welcoming and truly happy to see all the people who came to participate in their event. We met Amanda Warren who with a few others began the adaptive program at Vertical Adventures and we were excited to be a part of it.  When Amanda left to travel the country and move to Nevada we hoped the program would continue and this is when we met Jordan Kessler.  He is one of those people you are lucky to meet and learn from. He has a passion for people and climbing like very few people we have ever met before. He has overcome cancer and has proven life is about the adventure. Jordan has not only been Keith’s climbing coach for over a year but also one of Keith’s greatest friends. He pushes Keith to try harder and I am thankful for that. He treats Keith like anyone else, disability or not. We have seldom found that in our journey as a “special needs family’. We never imagined that Keith would have a passion for climbing the way he does. It is like therapy for him. He has always and still struggles with flexibility and muscle pain due to his disabilities but climbing helps in ways nothing else has.  He has built friendships and learned life skills that have carried him all the way to two USA Climbing National Adaptive Climbing Competitions, one in Somerville Massachusetts and one in our home climbing gym in Columbus, OH.  During his first adaptive nationals we couldn’t believe how far he had come, but little did we know that in just one year he would compete in his second USA Climbing National Adaptive competition and qualify for his very first IFSC   International Federation of Sport Climbing championship competition in Innsbruck Austria. Wow, just wow. He hasn’t even been climbing like many of these athletes have for years just 4. Just 4 short years in a sport that he loves, that he feels he is good at it and it challenges him.  

Before we planned our trip to Austria we went to a training camp in Louisville, Colorado. So off we went to meet his coach that would be traveling to Austria to coach the entire USAparaclimbing team. We had never been out west so we enjoyed the drive and the experience of just having the opportunity to travel and learn from new people at the EVO ROCK and Fitness. This gave him the opportunity to learn from others and meet some of the rest of the team.

 

While he was in Innsbruck he had the opportunity to talk with people from all over the world and he didn’t shy away from conversation although he has a speech impediment and thelanguage barrier didn’t bother him. He made friends from across the globe and came back with his sights set on Tokyo Japan for the 2019 IFSC World Climbing Competition. But he has to first tackle his USA Climbing Nationals in March 2019 that will be held in Columbus, OH.  He didn’t place as high as he hoped but he came in 13th out of 15 and was close to finishing one of the routes which were hard. They were holds that Keith has not had much experience with but now we know what we need to do to train for next year.  To just hear his name announced as representing Team USA made our hearts swell a little.

 

Keith is also the hype coach for The Benjamin Logan Raiders, a high school football team. He has been assisting with the team for 4 years.  Coach Fay, the head coach asked Keith to be part of the team after meeting Keith at a charity event.  Keith has been able to teach the young men on the football team about things that they may never learn sitting in a classroom. He is referred to as Coach K and is making a difference in others’ lives in ways most us will never do. 

 

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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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.

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