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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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.

The beauty 

By Ramona Joyce

When I found Families for HoPE, Leah Faith was 2 years old, and they had just had their first family conference. I hated that we had missed it because I needed it. I was determined we would be at the next one in 2008! I remember getting an email from Leslie that I was the first to register for the 2008 conference. I had no idea at that time just how much I needed it.

The bond I felt immediately with families I’d never met before is impossible to explain. It was beautifully overwhelming, emotional, spiritual. Families that were on the same journey of hope as my family.

I remember clearly sitting in a conference room with Dr. Eric Levy speaking and I couldn’t tell you everything he said, I was caught up in my surroundings. My daughter is very noisy but there was an older girl, Kristen, who was noisier and I loved it! There were suction machines running, children being fed through tubes, seizures happening, some crying, squealing and it was all so beautiful to me. The beauty of being surrounded by families and people who were not put off or grossed out by each other’s children is unexplainable in my world.

I was given information at that conference that I needed. But I was given so much more, I was given Hope!

My Leah Faith was 4 years old then; she is 12 now, and we’ve been blessed to attend every conference since then. My oldest daughter, Sadie was 9 at the first conference we attended; she’s 17 now. She bonded immediately with all the children with Holoprosencephaly and with their siblings who are on the same journey as she is. She drops any plans with friends because being at the conference is more important to her. It has been life altering for us as a family!

I realized at the 2014 conference that I’m now a “veteran” to some of the younger moms. Just as I pull from the experience and wisdom of the moms with children older than mine, they’re looking to me, Leah Faith, and even Sadie for their hope. The families whose child has left this world, bring such grace, and yes, more hope to all of us on this journey. It’s humbling, it’s beautiful, it’s family!

The sad fact is that we don’t know which children will not be with us at the next conference, so we soak up every single second that we can. We laugh, we cry, we learn, we celebrate, we embrace each other, and we embrace the journey. We would not be able to have this experience without Families for HoPE, Inc.

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

Family 

By Pamela Tucker

For my family, the Families for HoPE conference is a time in which we are able to bond and connect with others who know the challenges in raising a child with HPE. Although we are blessed to have a supportive family and close group of friends, it’s very hard for most people to understand our reality. The few days, every two years that we get to spend with our “HoPE family” are something that we always cherish and look forward to. The comfort I find in sitting at a table or snuggled up on a couch with other moms and their children are times that I will never forget. It’s an easy, safe, open environment in which you don’t feel judged or feel like you are an outsider. You feel accepted, loved, cared for. It’s impossible to not feel the hope in the air. For our family taking a yearly vacation with a medically complex child is just not feasible.

The conference gives us a chance to have a real vacation which includes our daughter and activities catered around her and her needs. It’s a time we truly treasure and also a time that allows me as a mother to feel rejuvenated and gives my spirit a lift.

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

Sisterhood of the Traveling Dress

By Brandy McIntyre

Once you start a journey with a special needs child, you read. You read all you can about their diagnosis. You read what life is like being the parent of a special needs child. You fill your brain with enormous amounts of knowledge. Sometimes you think your head will explode. I remember very early on and very clearly reading an article that marriages fail and you will lose friendships while on this journey. I felt a lump in my throat. How could this happen too on top of everything else that is going to change? I also thought that no way could this happen to me. But just like I thought I could never have a special needs child, my social life has definitely changed.

img_8388One thing that I never read about or was never prepared for was the friendships that I HAVE made. Thanks to social media and online support groups, our journey has been beautiful and never lonely. Very early on I made three new and beautiful friendships that I will cherish as long as I live. Because our children were all born around the same time, Rachel, Heather, Kristy and I formed a tight bond. All four of us completely different. Rachel was the godly Southern woman. Heather and I are the two oldest and by far loudest. Kristy is the baby. Heather and I both had two older daughters before having our child with HPE. Kristy and Rachel were both first-time moms. Two lived in Texas, one in Louisiana and the other in Mississippi. We were lucky that geographically we were close. This led to many trips to be together and spend time feeling normal.

A few years ago, we were heartbroken when our sweet friend Rachel passed away completely unexpected. It was devastating. Quickly Charlotte, Rachel’s sister, came into our fold. Her love for her niece, Jane, is undeniable. Even though life gets busy, and we don’t have the late nights to chat anymore since all our kiddos are now 4 years old and mostly behaving, we have a special sisterhood that will always be there. I love them all so much.

Our friendship is special. So special that when you ask your friend to strip naked and lend you her prom dress, she does it without a second thought. The night of the prom, I had a gorgeous dress, but when rumored riots threatened the safety of our families, action took over and I had no time to dress. So I threw on my Families for HoPE board shirt and headed to prom even though my handsome husband and three daughters were dressed to the nines.

Once we were at the prom I became envious of all the families taking pictures in their dressy clothes. I looked over and saw Heather in her huge, blue ball gown. I knew my problem was solved. Without question, Heather went with me into the bathroom, took off her dress and remained naked in a stall until I returned from taking a picture with my beautiful family. I had no makeup on and my hair was a mess, but my dress was PERFECT!

There are so many moms that I have met on this journey from Families for HoPE. My love for them and their children is indescribable. It’s bigger than my heart. Whenever I have the “why me” moments, I know God gave me my beautiful Mary Elizabeth so my life could be blessed by these women.

 

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

Journey Reminder 

By Cheryl Lehman

My family and I have attended almost every conference (2004, 2008, 2010, 2012, 2014 and 2016). We always look forward to these “family vacations” to get acquainted with our other “family” – our holoprosencephaly family. 2016 was different for me as it was the first time I have attended as a board member.

Leslie Harley had thought of a wonderful idea of creating a picture with all of the kids’ thumbprints on them. I volunteered to be in charge of this project and created a 2016 HPE family tree. During the conference, it was time consuming making sure ALL of the children in attendance were included (I would have felt terrible if we had left someone out!), but it was truly a blessing to get to meet each and every child and their parents! Although all these kids have the same brain abnormality, I could see first-hand how each child was so different yet their beauty shines through their challenges! HPE manifests itself in so many different ways and severities, but every one of these children bring great light to this world!

There were also a few devoted parents in attendance whose children are in their wonderful eternal home. I cannot imagine how hard it is to see the other families with their children when their arms are empty. Although this part of HPE is heartbreaking, they carry the legacy of their children on with their commitment to the other families. Therefore, we included these parents’ thumbprints in the sky in honor of their angels and turned them into balloons. This idea coincides with our tradition of releasing a balloon during the conferences for all the children who have passed away yet continue to impact this world.

This project also gave me the opportunity to talk to all the parents. I realize that although our lives are different in many ways, our journeys are very similar. Our unconditional love and passion for doing the best for our children are the same. And, there is nothing more comforting than knowing we are not travelling alone! The stories and information shared at these conferences are priceless! It is much more than just someone on the other side of the keyboard, too. It is real human interaction – the hugs, laughs and tears! We share our struggles, frustration, joy, sadness and HoPE that only other parents with kids like ours can truly understand.

Now, I have a daily reminder of these special souls I can see everyday hanging in my daughter’s bedroom. What a very special reminder of the family I will reunite with in 2018.

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