You will be OK!

"Kindness is the language which the deaf can hear and the blind can see."
--Mark Twain

A gentleman contacted Hills Elementary after he watched Olivia's story featured on the news. He wanted to donate towards the fundraising efforts. The kindness and generosity of others never ceases to amaze me. Along with the donation, he also sent this note.

 

"But you will be OK!" I already know that I will replay your quote in my head in the future. It will give me peace. Thank you Jeff!

Newspaper story on PCVI Society Fundraiser at Hills Elementary

Family brings attention to condition

November 8, 2014

Herald-Star

MINGO JUNCTION - When Olivia Ault was born, doctors grimly told her parents to take her home and "hope she smiles."

Olivia, the daughter of Anna and Tom Ault of East Springfield, suffered a brain injury that caused a stroke in utero and seizures after birth, leading to a diagnosis of cortical visual impairment. Now age 7, she appears to be a typical girl but still faces setbacks from her condition.

"Olivia had a stroke before she was born and it caused brain injury, developmental delays and visual impairment.  A lot of people do not know she's visually impaired until they get to know her," Anna said.

Her family is hoping to bring attention to children with her condition by supporting the start of a Pediatric Cortical Visual Impairment Society. Anna said the fundraiser began this past summer and plans are to contribute funds to the PCVIS and possibly present a check to the group during its annual convention in Omaha, Neb. She keeps in close contact with PCVIS President Richard Legge, who suggested the check presentation during the convention in June. The PCVIS is comprised of doctors and other medical professionals in the realm of cortical visual impairment, and Anna said surprisingly no such organization ever was in existence. With the formation of the new group, she hopes it will shed light on a condition that affects thousands of children.

"It is to help with research and support kids with CVI, among other things. They have to have $12,000 to start this organization and CVI doesn't have a society. Everyone on board has worked with kids in some way and CVI is the largest cause of visual impairment in children in western countries. It's a surprise that there's nothing out there like this," she said. "I thought, 'How could we help?' It's not only for Olivia, but it will help other kids with CVI as well."

Although Olivia lives in the Edison Local School District, she attends first grade at Hills Elementary School in Mingo Junction since it houses a visually impaired unit. School officials there have been assisting with her family's efforts and most recently collected $450 from a benefit dance and lemonade sale. Other Hills pupils donated $1 to attend, and organizers presented the family with a check at the conclusion.

Principal Cecilia Fritz said the school was happy to help Olivia and her family as they worked toward their goal.

"This is to help support Olivia. One year we voted for her to get a computer program and this is the first year for the dance," Fritz said "Last year, we held a dance for the United Way and it was a nice moneymaker. The kids dress up and it's like a social event for them."

Anna said teacher and family friend Melissa Brown contacted her with the idea.

"The whole community's response to Olivia and her needs is really amazing to me," Brown said, "This is what we want to do. We want to help out. It's amazing."

Total contributions so far have exceeded $1,300 and include profits from a GoFundMe webpage, a Thirty-One sales fundraiser and a lemonade and hot apple cider stand at the Unionport Apple Stirrin' Festival last month. Anna continued that online voting previously enabled Olivia and other kids like her to receive Lily LightAide device through Wonderbaby.org that utilizes LED lights, colors and movement for stimulation and learning. Wonderbaby.org is a project funded by Perkins School for the Blind in Watertown, Mass., the first school for the blind in the U.S. and where Helen Keller once was educated.

Because of her condition, Olivia also has issues with speech and cognition, making it difficult for her to communicate what she sees. She makes regular visits to doctors in West Penn Hospital in Pittsburgh and Children's Hospital in Cincinnati, plus she has therapy in North Lima. She can also count on her 5-year-old sister Amelia as a helper at home.

"She appears to be a happy, typical child and she continues to progress, but she is delayed. The stroke affected two-thirds of the right side of her brain," Anna explained. "The doctors told us to take her home and hope she smiles. What we have with Olivia is way past what we thought and our goal as parents is to push her way past where we think she can go."

Information can be found at the PCVI Society Fundraising link at GoFundMe.com and Olivia's CVI blog, "Hope She Smiles," at oliviacansmile.blogspot.com.

© Copyright 2014 Herald-Star. 

WTRF Channel 7 News report link:
WTRF 7 News report







...our adventure continues
Olivia's mom

ROAD TRIP!!!!

Our next adventure takes us to a suburb of Chicago, Palos Park, Illinois.    

Remembering back 7 years ago, I recall being asked many times during my first pregnancy; "Do you know what you are having, a boy or a girl?”  My response (as so many others have answered this question) was:  "It doesn’t matter as long as the baby is healthy."  As long as the baby is healthy... did not happen for my firstborn.  What we did receive was a devastating diagnosis and an unknown future.  

There are many questions that were swirling in my head during those days, almost like a tornado twister.  All I wanted to do was pick them from the air and find someone to give me answers, someone who could show me a glimpse of her future.  But no one could answer them, then or now.  I admit that some I am still afraid to ask out loud, ones I only ponder in the dark moments.  Maybe I really don’t want to know the answers.

One of these questions:   Will she ever be able to be independent and a productive member of society?  Will she be able to take care of herself financially when the day comes that her parents are no longer by her side?  

Following the birth of a child, parents are not usually preoccupied with what their child will be when they grow up.  But when a child that has a diagnosed problem, we are forced to think about their quality of life.  In fact, that's all we think about.  My question…What can she be?

"It is in our darkest moments that we must focus to see the light” - Aristotle Onassis

So I think...I brainstorm... I wonder -  What is the best way for my Olivia to build a nest egg to secure this future that has so many questions.  A financial future free of a burden that may end up falling on the shoulders of her younger sister. 

Olivia is beautiful, full of life and a soul exploding with happiness.  This is what we need to show the world.  Hmmm….Modeling?   Yes, let’s show the world that children of all abilities can be involved with advertising.  Let’s include all of God’s children. 

When I searched and came across a campaign already in existence, I knew that Olivia could be involved with this positive promotion of special-needs children.  Our current involvement is with Katie Driscoll’s campaign: Changing the Face of Beauty.  This is a creative movement of parents to integrate individuals with disabilities into mass media advertising.  It’s an inclusion of all kids with all abilities.

I then came across a post looking for 16 girls of all abilities and backgrounds, I applied.  This casting call was hosted by the Mighty Acorn Foundation.  Their mission is to restore hearts, ignite dreams, and empower the future of children across the world.  

I am honored that Olivia was chosen to participate in this movement.   This is what takes us on our road trip across three states.   Unlike the adventurous, free-spirit feeling of road trips back in my college days, our road-trips now usually consist of visits to doctors and specialists in the field of Cortical Visual Impairment.  This time, though, it is one filled with excitement and anticipation.  One that we are very proud to be associated with.  

Mighty Acorn Foundation and Changing the Face of Beauty are coming together to ignite dreams and empower futures of little girls by showing what is possible when children of all abilities and backgrounds are included in advertising imagery.  

Follow Olivia and other special children this week on 

     Changing the Face of Beauty: Facebook, Instagram & Twitter  and

     Mighty Acorn Foundation: Facebook

Our adventure continues in the Windy City,

Olivia's mom

When life gives you lemons...

When life gives you lemons... make lemonade, sell it and donate to the PCVI Society

7 years ago (tomorrow) we first met Dr. Christine Roman-Lantzy.  Who is Dr. Roman?  Well, if you live in the world of Cortical Visual Impairment, you know her to be a pioneer and an expert in her field.  She is world known from her research and work with children related to CVI.

Olivia was in the NICU at West Penn Hospital in Pittsburgh, PA after she was born when I first heard the name Dr. Roman.  Her husband, Dr. Alan Lantzy, was Olivia's neonatologist and mentioned that he wanted to have his wife see Olivia.  Due to the severity and the amount of brain damage that Olivia's MRI scans showed, it was likely that Olivia would have visual impairments, if not be completely (cortically) blind.  This means that her eyes are fine, but her brain is not.

A few days later, we were introduced to Dr. Roman.  At the time, I was unaware of this new world and didn't realize that we were in the presence of a celebrity.  Okay, okay... not a typical celebrity as we know it, but a celebrity of this new world that I found myself dropped in.

I remember the day like it was yesterday, August 27, 2007.   Dr. Roman assessed Olivia in the crib and her verbal reaction to each of her assessment areas were positive, not negatives like those I had heard the entire week prior.  This was my first moment of HOPE since Olivia was life-flighted to Pittsburgh.  Ironically this hope came today, my birthday, and it was the best gift anyone could have given me, a new mom.

We continued to visit Dr. Roman and Dr. Lantzy at the Pediatric View Program for follow up visits every few months for the first year.  As each visit passed, Olivia's CVI Range scores improved.  So, today August 26, 2014 we travel to Pittsburgh again to visit with Dr. Roman.  We always wait to hear those positive reactions like we heard when Olivia's future seemed so questionable.  We try to learn and understand more about CVI and the interventions used.  As parents, we are our child's #1 advocates.  We have the responsibility to be their voice, show our passion, and we support our children in all that they do.  We are now turning that passion in to power by supporting those that make CVI their profession.

When I heard about the newly forming PCVI Society, I knew there was something that I could do.  I understood the importance of forming a group where others shared a common goal, better yet shared our passion.  What better way to be an advocate than to support those professionals that spend hours researching, studying, writing, and assessing children with CVI.

My goal was to raise $500 by August 27th, the day we first met Dr. Roman.  This day 7 years ago HOPE entered our room and touched Olivia.  She touched our hearts and we knew that utilizing her knowledge, we could help Olivia reach her goals.  Christine Roman, PhD  and her husband, Alan Lantzy, MD are both sitting board members on the PCVI Society.

The Pediatric Cortical Visual Impairment Society will:
     -Promote optimal care for visual loss of affected patients
     -Promote research in PCVI
     -Develop best practice guidelines
     -Promote interdisciplinary learning
     -Disseminate information more readily and accurately
     -Advocate for patients with CVI, regarding resource allocation

PCVI Society meeting minutes
As you can see from the minutes, there needs to be a reserve of $12,000 before this can go operational.  So, this is our mission.  To raise funds to support this newly developed organization.

We took the 'sour' situation that we were handed and through Olivia's love and Dr Roman's knowledge, we made it so much sweeter.  That is what we did with the lemons that we were given.  We made sweet lemonade, sold it and we are well past our goal.

Our current grand total: $800!!!!! 

Please become a member and supporter of PCVI Society.  It could mean a better future for our children.  A very BIG thank you to those that have donated.  It means more than you know!

To buy a "virtual" lemonade or make a donation: Team Olivia PCVIS fundraiser

...our sweet adventure continues
Olivia's "thirsty" mom

Lucky number 7

7 years ago today my sweet Olivia came into this world. I could easily choose to sit and mourn this day, remembering the events that took place. Instead, I choose to rejoice in the miracle called Olivia. Everyday since has been a blessing and a gift. I am so proud of how far you have come and the strides that you continue to make. May this year be your best yet. I love you, the whole world full! 

...our 7 year adventure continues
Olivia's lucky mom

Pass or Fail

Today my students took their final exam.  As they approached the front of the classroom, test in hand, I remember being in their shoes.  I reflected back upon my days as a student nurse completing my exam and hoping that I had prepared enough.  Questions flooded my mind...

"Did I spend enough time studying?  

Could I have done more?  Did I focus on what was important?  Will I be successful?"

The hours that followed were so treacherous as we all waited impatiently for the results - Pass or Fail.  What would our future hold? 

It's not so different now, my days as a mother of a special-needs child.  At the end of the day as I sit here watching her sleep, I ask myself  "Have I done enough? Could I have done more?  Did I focus on the important areas?  Will she one day be successful?"

I didn't know the answers to these questions back then, and I sure don't know the answers now.  I am waiting impatiently to find out.  Although, I do wish time could stand still to give her time to catch up to her peers.  Maybe this would give her a fighting chance.  Maybe I'm wasting time wishing.  My mind is weary with these and other unanswered questions.  

As an academic advisor to my current students, I try to take my own advice:  Do your best, let your passion guide you, and focus on a successful future.  Everyday is a gift and an opportunity to learn.  

Reminiscing back on my college years, I wasn't the perfect student.  I made as many mistakes as memories.  In the present day, I am not a perfect instructor nor am I a perfect parent. I can only strive to improve and learn from my mistakes.  'Perfection' tends to be an unrealistic expectation and can lead to disappointment.  'Progress' is the word I prefer to use because it is a more attainable goal.  I have seen progress with Olivia and that is what sustains our efforts and drives us to reach further.  We aim to attain goals which may be just out of arms reach or a million miles away.   Either way, our sights are set on a better and brighter future for our daughter.  

Keeping these things in mind, I can not fail.  Better yet, I will not fail my sweet Olivia.  Will I be successful?  What will her future hold? 

                   ...only time will tell.  

     Have a peaceful sleep my sweet girl.

-our adventure continues 

Olivia's mom

Echo

There are certain times that words echo in our minds.  The words of the doctors saying “take her home and hope she smiles”  or the time another said, “with work, her vision can improve” or even the words of one particular therapist at Easter Seals.  Her words will echo in my head and in my heart forever.  I will explain this moment when time stood still.  

When I was pregnant with my second child, Olivia was only about 18 months old.  Remembering the nightmare of events that occurred with Olivia, we were very nervous about the pregnancy and delivery.  All went smoothly and on September 29th 2009 Amelia, Olivia’s sister, was born without complications.  After Amelia was born, I heard numerous times that “Amelia will be good for Olivia.”  I agreed that this child would be able to help Olivia during development or struggles that may arise in the future.  Maybe even helping her in ways that I didn’t realize at the time.  

But what I didn’t realize was that there was another perspective, another way to look at this scenario.  Bridgette, Olivia’s occupational therapist, would say something to me that literally stopped my world.  In conversation with Bridgette, I repeated what was said to me so many times…”She [Amelia] will be good for Olivia”.  And Bridgette looked at me without hesitation and said with passion, “and Olivia will be good for her”.  **Insert: frozen moment in time**  Wow!  I repeated that phase in my head…Olivia will be good for Amelia….Why have I never looked at it that way?  YES!  Olivia WILL be good for Amelia!!!  

Bridgette’s follow-up statements explained that her brother has Down Syndrome and he was partially responsible for shaping her into the person she is today.  In a way, he had even influenced the profession she decided to pursue.  She said that she didn’t know it at the time, but that every game they played as kids were actually a form of therapy for her brother.  She elaborated on her story and I began to understand.

This is so evident to me now.  Everyday we watch interactions between these two loving sisters.  We see Amelia being an untrained physical, occupational, speech, and vision therapist.  We witness caring and compassion that can not be taught.  I not only see the love they share for each other, but I feel it as well.  Now don’t get me wrong…they can fight, scream, yell, and cry just like other siblings, and that is okay too because that is normal, and we rejoice in anything that is ‘normal’.

And last week, when we were at Wheeling Hospital where Olivia had and EKG and ECHO.  Amelia (or Mimi as Olivia calls her) sat and held her hand when Olivia’s anxiety increased and she became upset about the technician attaching the monitor leads.  Amelia grabbed her hand and said, “It’s okay Olivia, it won’t hurt.”  And during the Echocardiogram when Olivia was finally calm enough to let them place the ultrasound transducer on her chest.  Amelia whispers in my ear…”Mommy, Olivia is doing so good, isn’t she?”  

I will never forget hearing that statement from Bridgette that day 4 years ago.  Those words had emotionally impacted me in such a way that I now appreciate what each of my girls bring to each other.  Every time I repeat this story to someone, I just can’t get through it without my eyes welling up with tears.  Those words truly echo within me.  

Pictured: Echocardiogram picture of our sweet Olivia’s heart.  

This story and names are used with permission:

“I can't even begin to tell you how honored I am to be a part of a memory as strong and positive as this one. You have really touched my heart and I cried tears of joy and celebration that my brother's life and legacy were able to shine through me and be passed on to such a wonderful family. Yes, please share this story. Maybe it will be an "aha" moment for another family.”  -Bridgette

Small town...big hearts

I wanted to take a minute (and a blog post) to reflect on our adventure with the Backpacking LightAide Program that was sponsored by Phillips, Wonder baby and Perkins.  Looking back on this I couldn’t have been more surprised by the entire experience.  

I originally entered Olivia because I thought that it would be wonderful to be a part of something from the beginning.  I felt the LightAide was a sort-of pioneering in technology for children with Cortical Visual Impairment.  My next thought was that this could give Olivia the opportunity to trial a new product to see if it was a good fit.  If it was…great, and if it wasn’t…then it’s better to know now than to invest in a piece of equipment that she might never use. 

Reading and researching about the LightAide, my intuition led me to think that this might just be what Olivia needed to motivate and engage her in her learning.  Could the LightAide be something that is more than just colorful lights?  Would this device encourage participation when the pre-programmed activities were utilized?  I had a good feeling about it.

Once we received word that Olivia was chosen, I was excited to not only introduce the LightAide to Olivia but also to her team.  I hope that my passion for finding the best way for Olivia to learn is transferred to the professionals that work with her daily.   What happened next was a complete surprise to us all.  Not only did we introduce Lily LightAide to Olivia and her team, but in reality we introduced it to the world.  

Literally, the news of the LightAide and the stories of the 6 children with Cortical Visual Impairment spread like wild-fire… 46 countries participated in the voting process!  I posted and shared our story and it was shared with others, hundreds of times over and to thousands of people.  More and more people grew to know Olivia and learn about her diagnosis.  

Through all of your efforts, the awareness for Cortical Visual Impairment grew.  Many people that have known me for years, stated that they never knew that I had to deal with all of these things.  I don’t look at it as “dealing” with Olivia and her disability; I look at it as having the opportunity to find new ways, break new ground, and push the limits to what the doctors once said that she might never be able to do.  

How people responded to our story is something I will never forget.  There are so many people, most I don’t know and will never know, that pushed for our sweet Olivia.  I will attempt to acknowledge some of these individuals below, but I hate that I can’t list everyone by name.  With 14 thousand votes, that would be impossible.  So for those of you that are reading this and voted for any of the children, I want to thank you from the bottom of my heart.

I was truly enLIGHTened and humbled by the support from our small town with very big hearts.

THANK YOU:

I would like to thank Bill Beattie, Superintendent Edison Local School District and Jamie Evans, teacher and coach at Edison High School.  It only took one email to let them know that Olivia was chosen for the Backpacking Program and Edison was on board with promoting her story.  Thank you #EdisonNation for using social media to make a positive difference in the life of my daughter…and others!  Not only did Edison vote, they didn’t stop there.  The students believed that ALL of the children deserved this new technology so they brought life to the idea of “Help Everyone SEE Our Spirit Week”, coordinated by Mr. Evans .  Through this student driven fundraising campaign, they raised a total of $ 3,209.47.  Donations poured in, not only from students, but individuals and businesses from the local community.  

In turn, every family will be able to receive a LightAide, all of the switches used to operate the LightAide, and the carrying case.  Another donation was made to purchase a LightAide and all the amenities to Easter Seals in Wheeling, WV for use with any child with Visual impairment.  And lastly, there was enough money left over to make a sizable donation to Abigail’s Angels.  Abigail, another Edison Local student, suffers from a genetic visual impairment called LCA.  She happens to be Olivia’s cousin.  Please visit her site: http://www.abigails-angels.com.  All funds raised are donated to the RDH12 fund for sight [a registered 501 (c) (3) charitable foundation founded by families of children with LCA caused by the RDH12 gene].

Not only did Olivia win a LightAide, but there was a very special person who contacted Olivia’s Aunt and wanted to donate a LightAide to Olivia.  Her request was that even though Olivia had won, she wanted her to have one that she would keep at school and didn’t have to transport back and forth.  By keeping it at school, it would also be beneficial for the other children in the Visually Impaired Program.  We want to thank Penny Mills for this extremely generous donation.  For someone that we have never met, your kind heart led you to want to reach out and make a difference and help our sweet girl.   You are very special!

The last person I would like to mention is one of America’s heroes.  Olivia received a very special gift from a thoughtful soldier.  Olivia received a necklace with a unique blue heart-shaped stone attached.  The note that came along with it said, “To: Olivia Ault, A gift to remind you to never stop smiling.  A small piece of Lapis to carry to your dreams.”  From: SGT James Goad  (Lapis: a deep blue semi-precious stone mined in northeast Afghanistan).  He mentioned that he hoped that Lily visits Miss Olivia again.  I am sure she will treasure this gift!

The good in people never ceases to amaze me.

Team Olivia:

Sister: Amelia (Mimi) Ault

Grandparents: Ge & Papa Lipinski, Grammy & Pappy Ault

Family:  Aunt Lori & Uncle Keith Kinney, Aunt Jodi & Uncle Jon Eick, Uncle Rich Ault

Cousins: Jon, David, Makara, Andrew & Abigail

Friends & Family: ALL of them!

Jefferson County Educational Service Center: Visually Impaired Program
Jeff Oblak:  JCESC Director of Special Education

Nikki Richardson: Teacher of the Visually Impaired

Miss Debbie Cosgrove and Miss Michelle Trikones:  Paraprofessionals VI unit

Edison Local School District Superintendent: Bill Beattie

Edison #TeamOlivia special supporter: Jamie Evans

Edison Local: teachers, staff, students, friends and community

Edison FFA

Indian Creek Local School District Superintendent: John Rocchi

Hills Elementary Principal: Mrs. Fritz

Hills Elementary School: teachers, staff, students, friends and community

Miss Mary: Occupational Therapist (Easter Seals)

Miss Kelly: Speech Therapist (Easter Seals)

Trinity Health System employees/co-workers and CEO Fred Brower

Wheeling-Nisshin Inc. employees/co-workers

Church families: Starkdale Presbyterian Church & Unionport Christian Church
All of our wonderful Facebook friends

All #TeamOlivia Tweeters:  esp. Hilary Kinney & Marshall County FRN & Wendy 

Social media force & networkers: Brett Youmans, Ryan Dunfee

Chris and Melissa Higbee: Support from the Higbillies 

Ault family Photos: Amanda Petrucci Photography

Other Donations from:

Matt and Dana Gallagher & family- Wallables letters

Everything Happy CMO Jon Repella- Happie Blankies

SGT James goad:  Lapis necklace

Penny Mills: LightAide donation, 3 switches and carrying case

Links below:

Amber Bobnar: Wonder baby & Perkins

Dr. Catherine Rose: Philips

Herald-Star & Wheeling Intelligencer:  Janice Kiaski

WTRF 7 news:  Sara Yingling

WTOV 9 news:  John Rudder & Celina Pompeani

Amber Bobnar & Wonder baby

* Backpacking LightAide Program:  Link

* Voting results page:  Link

* Voting map:  Link

* LightAide:  Link

Philips, Perkins & Dr. Catherine Rose

LightAide.com

Dr. Catherine Rose blog

Herald-Star/Wheeling Intelligencer & Janice R. Kiaski

* Reunite Lily & Olivia

* Girl wins contest for device

* Edison's effort helps Olivia & others

WTRF-7 & Sara Yingling

* Help Change One Ohio Valley Child’s Life:  WTRF7 link #1

* Local Girl With Visual Impairment Wins National Contest:  WTRF7 link #2

* Local Girl Who Won National Contest Now Raising Money for Those Who Didn't Win:  WTRF7 link #3

WTOV-9 Jon Rudder & Celina Pompeani 

*Help make a child's wish come true - WTOV9 link #1

LightAides for everyone -  fundraising link

-- Blog: Hope she smiles

-- Twitter: Olivia's mom

-- You tube: Olivia & Lily LightAide videos

Thank you again from Olivia’s mommy and daddy.  We are truly blessed by all of your support.  

…our adventure continues