2019 HoPE Moms Retreat

Registration is open for the 2019 HoPE Moms Retreat to be held in New Orleans, Louisiana on June 28, 29 and 30, 2019! This retreat is limited to only 30 moms, so don’t delay in registering!

Vision:  To bring HPE mothers together for a weekend retreat for the purpose of finding and sharing hope through activities for learning, growing, bonding, laughing, and playing.

Registration fee: $200 – The registration fee includes the following:

  • 3 nights lodging
  • Continental breakfast each morning
  • An evening meal on Friday
  • A lunchtime meal on Saturday
  • Bottled water, soft drinks, chips and snacks at the house throughout the weekend
  • Tour of the facility where Mardi Gras parade floats are designed and built
  • French Quarter scavenger hunt
  • T-shirt

Join us for other activities including live music, fireworks, a day at the beach and more. To receive a copy of the full itinerary or to learn more, please contact Monica Finch at monie_f@msn.com or Leslie Harley at Leslie.Harley@FamiliesforHoPE.org.

We hope to see you in New Orleans!

NOTE: Please register below from a laptop or PC. The screen orientation on a mobile device may prevent you from completing the transaction. If you do not have access to a laptop or PC, you may complete your transaction via PayPal using the button below. When the PayPal box appears, choose the option of “Pay with Debit or Credit Card”.

Exhausted

For the exhausted mom who hides a few minutes to cry in the bathroom…

For the mom hidden in the bathroom, because she needs a few minutes of tranquility while slipping tears from her eyes.

For the mom who is so tired that she feels she can’t continue, that she would give anything for a moment of peace.

For the mom who cries in her room for having scolded the kids for a nonsense that makes her feel guilty.

For the mom who desperately battles when wearing denim pants because she wants to look pretty and wear them to feel better.

For the mom who asks for dinner pizza because she didn’t reach the time to make dinner again as she expected.

For the mom who feels alone, even when she’s accompanied.

You’re worth a lot.

You are important.

You are enough.

This is a stage, a crazy and challenging stage for all moms.

But in the end everything will be worth it. For now it’s hard. Difficult in many and different ways for each of us. We don’t always talk, but we all fight, you’re not alone.

You are enough.

You give the best of you.

Those little eyes that observe you think you’re perfect, they think you’re more than perfect.

Those little hands that ask for your arms, they think you’re the strongest and you can conquer the world.

Those little mouths eating what you cook, they think you’re the best

Those little hearts looking for yours, they want nothing but you.

Because you are enough for them, you are more than enough, mom.

You are wonderful…

– unknown author

2020 Conference Registration

2020 Family Conference on Holoprosencephaly

Great Wolf Lodge & Conference Center – Mason, Ohio
June 14-18, 2020
Roxanne Steele and Becky Wilson, Conference Chairpersons

Check-in is on Sunday, June 14, 2020. Check-out is on June 18, 2020.

Registration Fee: $845 per family

Registration includes:
• 1 Family Suite for the nights of June 14, 15, 16 and 17. A Family Suite sleeps a maximum of 6 people with 2 queen beds and a sofa sleeper.
• Indoor waterpark passes for your family
• Childcare (if needed)
• Activities for moms, dads, teens, bereaved
• Exclusive admission to the waterpark one hour earlier than other GWL guests on Wednesday, June 17
• Welcome reception on June 14
• Lunch buffets on June 15 and 16
• Buffet dinner and entertainment on June 17

Families for HoPE will coordinate the hotel reservations for you, so you do not need to contact Great Wolf Lodge for reservations. (Families that require a larger suite or a second suite will incur additional charges based upon the room type needed. Check with the conference chair-persons for details.)

Please download the 2020 registration form to register for the 2020 conference. You may return the completed form by scanning and emailing to Roxanne@FamiliesforHoPE.org or via mail to:

Families for HoPE, Inc.
c/o Roxanne Steele
401 SW H Street
Richmond, IN  47374

We strive to make our conferences affordable for our HPE families to attend, and we will again offer the option to make online payments monthly toward your conference registration fee. Please see the following fee schedule for monthly payments. (All registration fees must be paid in full by April 30, 2020.)

• If you register in the month of April 2019, you will make 13 monthly payments of $65 per month
• If you register in the month of May 2019, you will make 12 monthly payments of $70.50 per month
• If you register in the month of June 2019, you will make 11 monthly payments of $77 per month
• If you register in the month of July 2019, you will make 10 monthly payments of $84.50 per month
• If you register in the month of August 2019, you will make 9 monthly payments of $94 per month
• If you register in the month of September 2019, you will make 8 monthly payments of $106 per month
• If you register in the month of October 2019, you will make 7 monthly payments of $121 per month
• If you register in the month of November 2019, you will make 6 monthly payments of $141 per month
• If you register in the month of December 2019, you will make 5 monthly payments of $169 per month
• If you register in the month of January 2020, you will make 4 monthly payments of $211.50 per month
• If you register in the month of February 2020, you will make 3 monthly payments of $282 per month
• If you register in the month of March 2020, you will make 2 monthly payments of $422.50 per month
• If you register in the month of April 2020, you will make 1 payment of $845

Words

By: Kelli Aardal Goin

Words she never got to say,
However communicated in a big way.

Let you know when something was wrong,
Loved to listen to her favorite song.

Her twin sister was her very best friend,
The one who with her time would spend.

She never got to go to school,
But learned to love the swimming pool.

Proved doctors wrong with each passing year,
Brought joy and laughter to those she was near.

Making it hard to say goodbye,
Trying not to question God on why.

Trusting that she’s in a better place,
Knowing one day we’ll once again see her sweet face.

 

 

A Wish With Wings

By: Kelli Aardal Goin

The news that no parent wants to hear,

Their child has a terminal illness and isn’t guaranteed a year.

The hospital visits become a common affair,

Their child’s story they are often asked to share.

Stress begins to take its toll,

Each family member having to play a different role.

Prayers go out each and every night,

That their child’s future would look more bright.

A Wish With Wings learns of the child,

Ask for their dreams to be compiled.

Puts together a magical trip,

With the help of some sponsorship.

Makes sure it’s perfect in every way,

So they’ll always be able to reflect upon this day.

When their child got to live their dream,

With happiness they clearly did beam.

Building memories they’ll cherish so deep in their heart,

Not even death can tear them apart.

 

Click here to check out Kelli Aardal Goin’s book “Abbey Grace Wants to Play” on Amazon!

If there was a cure

If there was a cure.

I would see you crawl and I would follow you all around to make sure you weren’t getting into trouble.

If there was a cure.

I would see you unsteadily walk around and grab all that’s around you.

If there was a cure.

I would see you run away from me squealing when you stole that cookie from the kitchen.

If there was a cure.

I would swing you at the park so you could feel the fresh breeze from the air and I would hear the giggles as the movement tickled your tummy.

If there was a cure.

I would take you to the pool and hold out my arms so you could jump to me.

If there was a cure.

My heart wouldn’t hurt so much thinking about all of the should’ve beens.

But since there is no cure.

I will love you endlessly and learn all there is to know about this life.

So even without a cure.

It will still be a good and beautiful time. 🐝

Where we are

By Nikki Tuma

Here is a little story about Kreighton that got us to where we are today :

Kreighton was born July 25, 2013.. when we found out we were pregnant with him, there were no abnormalities that arose with the ultrasound. July 25th came and it was my induction date (he was originally due on July 18th) , during my induction, I was complaining that i was hungry and the only thing they allowed me to eat was a red Popsicle. Everything was going great until there were some alarms sounding and a lot of nursing running in the room. I had no idea what was going on, i was just laying there eating my Popsicle. Well, i guess his heart rate dropped super fast for some unknown reason, they threw my Popsicle away, put me on my back and threw oxygen on me.. all was well after that until the Dr. came in and broke my water. When the dr broke my water there was quite a bit of meconium (this is where the baby has a bowel movement in the womb) and he was concerned that he may aspirate and talked about having a C-section. Shortly after the doctor left, Kreighton was ready to come out full force. There was no time for a C-section, and he was born … they had a NICU nurse in there to check him out, and everything was A-OK… he came out screaming!!! we got discharged 2 days later and went home to what we thought would be a “normal” life raising our now 3 beautiful kids. I tried breast feeding, but it just wasn’t going great, and he wasn’t latching very well.. When he drank out of a bottle, it leaked out of his mouth a lot, we just assumed it was the type of nipple so we tried other bottles and it still happened. As the months went on, Kreighton, was barely gaining weight. He was staying around the 1-3% on the growth chart, and at our monthly Well Baby checks, it was showing he was not meeting the milestones as he should be. at about 8 months old kreighton was still not rolling over, let alone sitting up so his doctor then referred us to a GI doctor in Omaha because he was more concerned about his weight loss than his milestone. The GI doctor had us just increase his bottle feeds and come back to recheck weight in a month. when he went back for our 1 month check, I had mentioned to the GI doctor about Kreighton not meeting milestones, so he then referred to a neurologist in the same clinic. We went and seen him that day.. . At first, the Neuro dr just said he thinks Kreighton was just going to be a “slow learner” and ordered physical therapy for 3 months and then to come back and re-check his progress. After the 3 month recheck * this was July 21st (we had a GI appointment this same day ) he said he wanted to get a MRI at some point just to see if this showed anything (he said it was no rush but just before the end of august to get this done ). We then left the neuro appointment and went to GI. At this appointment they admitted him to the hospital right away because he had lost 4lbs in 2 weeks!!! . Since he was in the hospital, they went ahead and did the MRI to get it out of the way. While at the hospital , they found that kreighton had a super high palate (the roof of your mouth) its so high arched that it almost didn’t form they told us. They said this was the reason for the lack of being able to suck on a bottle correctly. SO, we ended up having to put in an NG tube.and then eventually put in a permanent Gtube in September. This broke my heart, but it was nothing near close to how broken my heart was 2 days later the day before my little Miracle turned the big ONE . As me and my wonderful husband were sitting in the hospital room holding kreighton and playing with him, two doctors (his neurologist and the hospitalist) along with 4 nurses came into the room with papers. My heart sank as i knew this wasn’t going to be good news. This would be a time a day i will NEVER EVER forget , i still get emotional talking about this day. Dr. told us that he had some bad news, and that his MRI shows a very rare brain malformation called HOLOPROSENCEPHALY . He told us that the survival rate of a child with this condition was very very slim. The doctors gave us as much information as they could and tried to get everything together so we could go home the following day. The day my baby turned ONE, we were able to go home that afternoon. The last year and a half have been one hell of a roller coaster ride. As soon as we got home, I searched on Facebook for anything even remotely close to HOLOPROSENCEPHALY because I knew there were groups for anything on FB. I found the most amazing support group ever called Families for HoPE. When I found this group, we learned that in just 2 short months, they were hosting a conference in Dallas for families who were affected by HPE (holoprosencephaly) we wanted to go so bad to learn more about this condition and to see what we could do to better help Kreighton as well as meet other families going through the same thing. We have now attended 3 conferences and look forward to our 4th conference next summer in Ohio !! Kreighton strives everyday! He is continuing to work so hard at therapy. People think I am nuts driving a little over an hour one-way just to take him to therapy, and honestly, I DON’T CARE. His therapists are ABSOLUTELY AMAZING with him and have been there with him through this whole thing. Here we are, 2019…Kreightons legs aren’t working as well as they have been, he had surgery in late 2017 for a tendon release which has helped him not be as tight. He still seems to drag his leg but they think it’s more a neurological issue rather than an orthopedic issue … but we do what we can and he works with what he has ♡♡ He has finally reached 45lbs!!!! As you know weight has been an issue since day 1 !!! If you can believe it, he was the biggest baby coming into this world at 8lb 6oz !! And the biggest blessing of all… he will be 6 in 4 short months guys !!! SIX !!!!! and if you have made it this far reading …. We thank EACH AND EVERY ONE of you who have supported Kreighton in every way, shape, and form . If it wasn’t for all of the support from you all, I do not think we would be as strong as we are today.!!!

 

Walk Around The World

Join HPE families for a Walk Around the World!

Did you know that Families for HoPE has had contact with HPE families from over 50 countries around the globe? A universal refrain we hear repeatedly is the need to raise awareness about holoprosencephaly and help others find HoPE.  As HPE families, what can we do to share our HoPE and holoprosencephaly with the world?

Families for HoPE invites all HPE families to host a Walk Around the World in your local community to raise awareness of holoprosencephaly and to raise funds for the mission of Families for HoPE. (You can also run, bike, swim, dance, roller skate, ride a horse—whatever you enjoy doing with family and friends.)

1. Set a date. We suggest that your walk take place between the dates of April 15 and June 15.

2. Set a location. Walk or hike in a local park, walk in a gymnasium or around the track at your local school. Be sure you have permission to walk in that location prior to your event.

3. Set a goal. Determine how much money you would like to raise and how far you are willing to walk.

4. Recruit walkers. Ask your family and friends to walk with you, and ask them to invite their family and friends to join the fun and support HPE awareness. (Invite scout troops, classmates, co-workers; hang a flyer at the gym, at school, at work, at church, at Weight Watchers.)

5. Use Facebook. If you use Facebook, create an Event on Facebook to help advertise your walk. You and your walkers may also create a Fundraiser to collect donations at: https://www.facebook.com/fund/holoprosencephaly/

6. Inform Families for HoPE. We can help promote your event on our website and social media accounts. Also, Families for HoPE can search our database and reach out to other HPE families in your area and inform any of our donors who are in your area as well.

7. Share your story. Contact your local newspaper or television news channels who may be interested in covering your walk as a human-interest story.

8. Take photos at your walk. Share them on social media, and be sure to tag the city and state, or country where you are walking. Let’s flood Facebook, Twitter, Instagram with all of our walkers and let’s see how far and wide our HoPE can reach around the world! Use hashtag #HoPEwalk2019

9. Collect and submit donations. In addition to a Facebook fundraiser mentioned in #5 above, donations from your walk may be submitted to Families for HoPE via online donation at www.FamiliesforHoPE.org. Checks may be payable to “Families for HoPE, Inc.” and mailed to Families for HoPE, Inc., 1219 N. Wittfield Street, Indianapolis, IN
46229, USA. Please convert all cash to a check or money order.

Funds raised helps Families for HoPE continue its mission to serve our HPE families through the following:
1. Distribution of information and educational materials about holoprosencephaly
2. Conduct Family Conferences on Holoprosencephaly
3. Networking and support through social media platforms
4. Medical information collaborations with The Carter Centers for Brain Research in Holoprosencephaly
5. Parent-to-parent support program
6. Sponsor special events
7. Medical outreach

For questions, please contact Becky Wilson (Jack’s mom) at Becky.Wilson@FamiliesforHoPE.org or Families for HoPE at
info@FamiliesforHoPE.org

Click the links below to download this information and a pledge form you can use to help collect donations.

Walk Around the World Announcement
Pledge Sheet for Walk Around the World

What HoPE means to us

What is it really…this HOPE? And why is it so important?

Hope is something we can feel, but hope is also an intentional choice.

Definition;
hope  /hōp/
a feeling of expectation and desire for a certain thing to happen.”he looked through her belongings in the hope of coming across some information”

synonyms:  aspiration, desire, wish, expectation, ambition, aim, plan, dream, daydream, pipe dream; More

verb – want something to happen or be the case.”he’s hoping for an offer of compensation”

synonyms:  expect, anticipate, look for, wait for, be hopeful of, pin one’s hopes on, want

Hope.  It’s a simple word and yet can mean so much to anyone going through a difficult time. It can mean the difference between hanging on and giving up. It can mean a tiny smile in the face of a devastating diagnosis. It’s one word with no true definition — hope can mean anything you want it to.

With the lens of hope, we can see right through life’s quandaries.

“HoPE means making sacrifices and finding patience I never thought I had. It means finding everything I NEVER knew I needed, everything I needed to be a better me. It means rising above average and being that unicorn in a field of horses!”  Jennifer Hull

“HoPE means never giving up, that my son is a fighter. Small, but mighty miracle.”  Nikki Tuma

“To me, HoPE means even on the darkest days I can still see some light. In a sea full of ‘no’s HoPE is the float that keeps my head above water!”  Laura Findeison

“HoPE is a glimmer of light where light is absent. It’s a fight against darkness.”  Larisa M Denney

“Miracles happen. Our kids are stronger, more resilient and stronger then many, many people will be in their lifetimes.”  Gemma-Sarah McCusker

“HoPE means living life anyway.”  Stephanie Benigno Bley

“I guess it’s kind of like faith. Without it, what do you have? And it kind of makes me think of something that we’ve always said…no matter what, everything will be okay.”  Tawnya Maxwell Skaggs

“The possibility of a better tomorrow.”  Rebecca Lou Smith McGee

“Never give up.”  Monica Finch

“HoPE is a small word with a big meaning to my family and me. Hope is seeing light despite the darkness. It means never giving up, means family and love. It’s the glue that holds us together.”  Tonja Ross

“Believing in the unbelievable.”  Jolee Krause

“HoPE is the strength and trust of knowing God is working in my child, to be who He intended him to be.”  Laura Hamilton Callaway

“A different kind of normal.  Determined. Fighter. Miracle.”  Leigh Grinter

“Believing there is more out there to find to become better.”  Pete Lawler

“Always a chance”  Dorothy Lawler

“A confident expectation despite all odds.”  Andrea Curtis

…I’ve learned that as long as I have breath, hope is available.

My Amazing life, at least it is to me!

By Heather Rinard

The blades of the grass softly whispered their song in my ear, as I laid sprawled out on the checkered cloth, enjoying our teddy bear picnic. Momma made our childhood magical. From tea parties in the garden, family night games of drawing in the dark and Red hots in our hot cocoa while we stared through the skylights waiting to see a glimpse of Santa’s slay.

Daddy read every book series out there in the 80’s to my baby sister and I. You see Little House on the Prairie was my favorite. My momma fixed My sis’ hair like Laura Ingalls and I always looked liked Nellie Olson. I guess that could be why it was recommended that I revisit kindergarten for the second time. To learn better social skills. Apparently I thought I was the teacher.

That same year my older sister Christie was married in March. I was dripping in cream lace and peach flowers. It snowed that morning.

Now there is only 3 of us siblings at home. By the time I was 10 my brother moved on and I became the oldest.

I debated my way through jr high. Danced on the hearts of many in drill team and in my senior year was captain of the cheerleadering squad.

The van was bulging at the seems. My Nellie belle, a 71 VW bug, was in tow behind. Off we went to Southern California from suburbia, conservative Idaho. Nothing could have prepared me for that eye opening experience into the world. I graduated co-valedictorian with a degree in Interior design.

I tempered with fate, falling for business in front and party in the back, criminal boy.

4 months later pregnant and married. Then 4 years later contemplating suicide and drowning in depression. I tidied up and threw away the debris. My little boy, Gavin and I had a vibrant new beginning.

My heart flutters, swooning over the freckled faced red head. Was it Love at first sight? Matt and I met on June 9th, a month later at minor league baseball game I was wrangled into playing a game on the field. Guess what’s in the box! The last box was a ring, Matt was on bended knee in front of a crowd of thousands professing his never ending love to me. A month later we were married in a funeral home. We drove away hearing the clanging of tin cans behind the hearse.

Shortly after Samis 2nd birthday the Economy tanked and we moved half way across the states to Texas. The next to come was my Izzy bug. Now there’s 3. We were happy and fulfilled. Life was planned out, little did I know that God had other plans. After a failed vasectomy, we were expecting our 4th child.

I stood there knowing that was the last time I would see my daddy. His raspy voice said I love you and drive safely. 26 hours later we pulled into the driveway. At 11pm the call came in, daddy was no longer in pain. We honored daddy by naming our 4th child after him, Charliedawn.

Early Wednesday morning my husband and I were crammed on a small bench in the NICU. The sun filtered in warming the ice cold room.

The room became a blur, my head was spinning and the tears stung my cheeks. Words were spewing out of their mouths like lava hitting the ocean; vegetable, no quality of life, will NEVER know who you are and won’t live past 6 months. Our world fell apart.

The phone rang, on the other end was the PICU Hospitalist. My breathing quickened, my heart sank and the words “nothing more we can do” echoed in my ears. However by the end of the day Charliedawn starred death in the face and screamed I’m not done yet! It’s my birthday and I made it to 1.

Shortly after Charliedawns trach surgery, the 3 kids and I crammed into the mini van and ventured out to the next chapter in our lives.

Cactus and rocks as far as you could see was our landscape of our future.

Maybe the journey isn’t so much about becoming anything. Maybe it’s about unbecoming everything that isn’t really you, so you can be who you were meant to be in the first place.

 

Fun on St Patty’s Day

Every March 17, St. Patrick’s Day is celebrated with parades, parties, and a lot of green. This date marks the death of Saint Patrick, the Patron Saint of Ireland. … Today, the holiday has evolved to become a secular celebration of Irish culture. Green garb, leprechauns, pinching, drinking, partying, parades, more drinking.

With all this celebrating how can we include our children?

Eat all things green

Celebrate the day by feasting on all things green. For breakfast, try some green eggs and ham while reading the Dr. Seuss book to your kids or dye your pancakes green just for fun. For lunch, try serving up a buffet of green foods – broccoli, celery, salad, guacamole, and grapes. Wash it all down with some green juice. Who knows? Maybe your child will try some new foods trying to get good luck on St. Patty’s Day.

Set a leprechaun trap

The night of the 16th, have your kids set a leprechaun trap using a box or laundry basket. Put gold coins inside to attract your leprechaun, but remember, leprechauns are very sneaky and do not like to be seen. In the morning, your child may awake to see that the leprechaun has taken their gold coins and left them a small gift or treat.

Make slime

Have you heard? Slime is all the rage. This borax-free recipe is great to squish and stretch. Get the instructions: littlebinsforlittlehands.com

St. Patrick’s Day Math

Don’t let your brain turn to green mush. Play this fun St. Patty’s math game with the kids. Play it here: coolmath-games.com

Prepare Irish Potato Candy

Despite not containing potatoes or being from Ireland, this simple, no-bake confectionery treat was developed in Philadelphia by Irish immigrants, and it remains a St. Patrick’s Day tradition in the City of Brotherly Love. 

These delicious cinnamon-coated sweets resembles miniature potatoes and are often rolled into potato shapes and served in a “potato sack” (a brown paper bag).

You’ll need

  • ¼ cup butter, softened
  • 4 ounces cream cheese, softened
  • 1 teaspoon vanilla extract
  • 4 cups powdered sugar
  • 2 ½ cups sweetened flaked coconut
  • 1 ½ teaspoons cinnamon

Here’s what to do:

1. Beat butter, cream cheese and vanilla together. 

2. Slowly add the powdered sugar. 

3. Then, mix in coconut and stir until well-blended.

4. Form tablespoon-sized balls, roll in cinnamon and roll each one into a potato shape. 

5. Place the pieces onto a foil-lined cookie sheet and chill until set. Keep them in the refrigerator until serving time.

The Benefits of Inclusion

Children with Special Needs

•affords a sense of belonging

• to the diverse human family

• provides a diverse

stimulating environment in

which to grow and learn

• evolves in feelings of being a member of a diverse community

• enables development of

• friendships

• provides opportunities to

• develop neighborhood

friends

• enhances self-respect

• provides affirmations of

individuality

• provides peer models

• provides opportunities to be

educated with same-age

peers

General Education

provides opportunities to experience diversity of society on a small scale in a classroom

develops an appreciation that everyone has unique and beautiful characteristics and abilities

develops respect for others with diverse characteristics develops sensitivity toward others’ limitations

develops feelings of empowerment and the ability to make a difference increases abilities to help and teach all classmates develops empathetic skills provides opportunities to vicariously put their feet in another child’s shoes

Teachers

• helps teachers appreciate the diversity of the human family

• helps teachers recognize that all students have strengths

• creates an awareness of the importance of direct individualized instruction

• increases ways of creatively addressing challenges

• teaches collaborative problem solving skills

• develops teamwork skills  acquires different ways of perceiving challenges as a result of being on a multi-

disciplinary team

• enhances accountability

skills

• combats monotony

Society

• promotes the civil rights of all individuals

• supports the social value of equality

• teaches socialization and collaborative skills

• builds supportiveness and interdependence

• maximizes social peace

• provides children a

miniature model of the democratic process

Benefits of Inclusion

Inclusion: Maximizes Individual Growth and Builds a Sense of Community

• enhances appreciation for the diversity of the human family

Source: “Creative Educators at Work: All Children Including Those with Disabilities Can Play Traditional Classroom Games,” by Donna Raschke, Ph.D., and Jodi Bronson, Ed.S., 1999 http://www.uni.edu/coe/inclusion/philosophy/benefits.html

Save the Date for the 2020 Family Conference on Holoprosencephaly

Jack Wilson has attended every conference that Families for HoPE has conducted, and he has been busy today making phone calls to make sure his friends save the date for the 2020 Family Conference on Holoprosencephaly!

Please watch this video of Captain Jack in snowy Wisconsin calling his friend Brianna in New Jersey to share the exciting news with her.

Our friends at Great Wolf Lodge in Mason, Ohio loved our HPE families so much in 2018 that Families for HoPE has decided to return!  Save the dates of June 14-17, 2020!  We have informed the teams at the Carter Centers and the NIH, and they are excited to be joining us all once again!

Additional details will be announced in the weeks to come regarding registration fees, volunteer opportunities, and more!

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Rare Disease Day

What is holoprosencephaly?

Holoprosencephaly is an abnormality of brain development in which the brain doesn’t properly divide into the right and left hemispheres. The condition can also affect development of the head and face. In general, the severity of any facial defects corresponds to the severity of the brain defect. The most severely affected people have one central eye (cyclopia) and a tubular nasal structure (proboscis) located above the eye. In the less severe forms, the brain is only partially divided, and the eyes usually are set close together. Other signs and symptoms often include intellectual disabilities and pituitary gland problems. Holoprosencephaly can be caused by mutations in any of at least 14 different genes; chromosome abnormalities; or agents that can cause birth defects. It may also be a feature of several unique genetic syndromes. In many cases, the exact cause is unknown. Life expectancy for people with this condition varies, and treatment depends on the symptoms and severity in each person. (https://rarediseases.info.nih.gov/diseases/6665/holoprosencephaly/cases/27877)

Subdivisions of Holoprosencephaly

*Alobar, in which the brain has not divided at all, is usually associated with severe facial deformities. 

*Semilobar, in which the brain’s hemispheres have somewhat divided, causes an intermediate form of the disorder. 

*Lobar, in which there is considerable evidence of separate brain hemispheres, is the least severe form. In some cases of lobar holoprosencephaly the baby’s brain may be nearly normal.

Causes

Holoprosencephaly is a birth defect that arises during the first few weeks of the pregnancy. Diabetes in the mother during the pregnancy can increase the risk of holoprosencephaly in the fetus. However, for most children, no known intrauterine exposure is identified that is causally related to holoprosencephaly in that child.

Some children will have an identifiable genetic cause of holoprosencephaly. Approximately one-third of children born with holoprosencephaly have an abnormality of the chromosomes, which contain the genetic material (DNA). The most common chromosomal abnormality associated with HPE is when there are 3 copies of chromosome 13 (trisomy 13), although a number of other chromosomal changes can also cause holoprosencephaly.

In other children, holoprosencephaly is due to a change in a specific gene. These changes cause the genes and their proteins to function abnormally, and this affects the development of the brain, resulting in holoprosencephaly. Some of these genes are SHH, SIX3, TGIF1, ZIC2, PTCH1, FOXH1, NODAL, CDON, FGF8, and GLI2. Holoprosencephaly can also occur in certain genetic syndromes in which there are other medical issues besides those mentioned in this report that affect organs in addition to the brain and face (e.g., Smith-Lemli-Opitz syndrome).

Despite the above understanding of the causes of holoprosencephaly, the exact cause of the condition is not identified for many individuals. There are likely to be additional genetic causes other than those already known and mentioned above. (https://rarediseases.org/rare-diseases/holoprosencephaly/)

Helpful tips with an IEP

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An IEP is the individualized education plan, a document written for a child with a disability that identifies needs, sets goals and lists services to insure optimal educational and vocational outcomes. Often the IEP process can be intimidating and overwhelming to parents. The following will help parents become engaged participants in the development and implementation of an effective IEP.

Ask clarifying questions

• Ask participants to clarify education jargon.

• Make sure you completely understand your child’s actual diagnosis.

• Ask clarifying questions about start dates, length of services, and the procedure for receiving the appropriate accommodations.

• During each meeting, be sure to ask questions about the IEP goals that have been set and whether they are being met. If your child has not met the goals, don’t be afraid to ask what the next steps are toward meeting the goals and whether the goals should be revised.

Set Goals as a team

• Ensure that you understand, agree with, and have contributed toward the goals set for your child. For instance, during one of my daughter’s IEP meetings, I discussed my child’s quiet personality and mentioned that she needed a speech therapist who would understand the importance of developing a relationship with her before proceeding with the implementation of the goals. You are your child’s first teacher. The knowledge you have about your child should be shared with and welcomed by the IEP team in order to achieve success.

• Be sure that you, the assigned specialist, and your child’s classroom teacher are partners, working toward the same goals, and that the accommodations and services carry over into the classroom and into the home. During the IEP meeting, ask questions to ensure that all parties involved set specific dates to collaborate with one another periodically throughout the academic school year.

Understand the IEP Process and Know Your Rights. 

It is of paramount importance to read up on the IEP process, become familiar with IDEA (Individuals with Disabilities Education Act), and understand your rights as a parent. In addition to studying the law, many parents seek advice from an advocate and network with well-informed parents who have first-hand experience with the IEP process in their school district.

Make All of Your Requests in Writing

All requests should be made in writing to create a documentation trail that provides a history of the child’s academic needs and requests to the school district (e.g., requests for an IEP meeting, an assessment of any kind, or a classroom placement recommendation). It also allows you to state your requests in your own words. In addition, ask the IEP committee to record these written requests as part of the minutes in an IEP meeting. The IEP committee can accept or deny these requests. If the committee denies the requests, then they must follow the procedural safeguards in IDEA and provide written notice of why they are denying your request. If the request is not documented in writing, the school district is not required to provide the service. (Be Familiar with Prior Notice of the Procedural Safeguards (34 CFR 300.503))