Jumping into the Big Pond

Next month, my husband and I are going to the first annual RARE Tribute to Champions of Hope Gala and the patient advocacy meeting they are hosting the next day.  This will be a place where patient communities, like our Little Miss Hannah Foundation, can engage with each other and experts on various topics ranging from legislation to non-profit business models.

At the 2012 Tribute Gala, we will honor individuals for their contributions in the areas of advocacy, science/research, industry, policy and global collaborations.

Please join us for a night of inspiration and hope as we recognize individuals and organizations that are working tirelessly to help millions of children and families impacted by over 7,000 different types of rare diseases.

As ANYONE who reads my blog knows, I am very, very passionate about create awareness for childhood rare diseases.   It isn’t something that I do for fun.  It is something that I HAVE to do.  It is so hard to explain because before Hannah I never felt very passionate about any cause.   But this has grabbed my heart completely.

Awareness for life-limiting children’s rare diseases, my focus…It is something that just has to be done.

Chris Mann

So next month, we are going to this conference to meet all of those people who have fought so hard for rare disease.   The “celebrities,” if you will, of rare disease awareness.  I have no idea what to expect at the “Gala” that night, but I am thrilled that we are able to go.

Best of all, I get to be a small part of that evening.  I was asked  to submit Hannah’s story for their “patient stories” section of the program.  To me, that was a huge honor!   All these people from around the country are going to read about me and my daughter – me, just a “Mom on a Mission” living in Vegas.

Besides, seeing Chris Mann (from “The Voice”) performing that night at the event is NOT a bad thing either!

Our Rainbows to the Sky Event

event 34(click for event program)

On July 25, 2012, the Little Miss Hannah Foundation launched ourselves into the Las Vegas community with our “Rainbows to the Sky” event, our first fundraiser and community event.

DJ Miguel Guidos of Soli Concepts Entertainment kept the crowd going with great music, audience participation, raffles, and the highlight of the evening…three balloon releases sending up over 400 balloons.   Each of these releases sent balloons with personal messages written on them up to heaven.   They were all incredibly moving, especially the 7:30 pm special children’s release…

(click for more details, pictures, and videos)

Tomorrow’s balloon release

July 25th ~ Little Miss Hannah’s Rainbows in the Sky Event

If you are unable to make our event on July 25th and would like to have a balloon released with your personal message to someone special, please go to http://littlemisshannah.org/rainbows-event-balloon-release

All proceeds from our balloon release will help us fund services for our Little Miss Hannah Foundation families.

Las Vegas Review Journal Article on our family

After losing their daughter to rare disease, a Henderson family has created a foundation in her honor

Make-A-Wish Disney World Trip, April 2011 – Members of the Ostrea family, clockwise from left, Abigail, Carrie, Robert, Ethan and Hannah, are shown at Disney World. Hannah, who suffered from Gaucher disease, died in December. She was 3. Her parents plan to launch the Little Miss Hannah Foundation to offer resources to the families of children who suffer from life-limiting diseases.

BY MICHAEL LYLE (original article)
VIEW STAFF WRITER
Posted: Jul. 10, 2012 | 12:35 a.m.

 

Even though Hannah Ostrea died when she was 3, her family plans to make sure her name and memory live on through the Little Miss Hannah Foundation, which offers resources to families with children of life-limiting rare diseases.

The foundation’s official launch is scheduled from 5:30 to 9 p.m. July 25 at The District at Green Valley Ranch.

“It would have been Hannah’s fourth birthday,” Ostrea said.

The event, “Rainbows to the Sky,” is scheduled to be a fundraiser. The family also hopes to create awareness for the organization and rare childhood diseases, such as Gaucher disease, from which Hannah suffered.

The family-friendly event is set to include music, activities, raffles and a balloon release to honor the memories of those who have died.

Ostrea’s goal is to raise $10,000, which should be raised through the raffle.

“I think to be comfortable, that’s a good goal,” she said.

When Ostrea and Robert, Hannah’s dad, married 15 years ago, they discovered they were unable to have children.

“We went through fertility treatments,” Carrie said. “Had four or five miscarriages.”

To start their family, the couple decided to adopt – first Ethan, then Abigail. About four years ago, when the family was living in Texas, Carrie started getting sick.

“It was (Abigail) who said maybe I was pregnant,” Carrie said. “(My husband and I) looked at each other and were like, ‘That’s not possible. We are infertile.’ ”

Carrie went to her doctor, and sure enough, she was 10 weeks pregnant.

“We did the (amniocentesis),” Carrie said. “We did genetic testing for Jewish diseases because I’m Jewish. We came back negative for Down syndrome and other chromosomal disorders. We found out we were having a girl.”

Hannah – or Little Miss Hannah as the family called her affectionately – was born July 25, 2008, weighing 6 pounds and 11 ounces.

“We had one good night without any medical issues,” Carrie said.

The next night, Carrie, who was half asleep, heard nurses talking about Hannah.

“She said, ‘This baby doesn’t need her kidney,’ ” Carrie said. “I just started screaming, asking what they were talking about.”

The hospital began to run tests on Hannah and discovered that her spleen was enlarged. Hannah spent the next few weeks in the neonatal intensive care unit as the doctors tried to find answers.

After Hannah was released, still with no clue to her ailment, Carrie met with specialist after specialist until a diagnosis was reached: Hannah suffered from neuronopathic Gaucher disease, a life-limiting genetic metabolic disease.

Hannah was one of about 50 current cases in the country, Carrie said.

“She was either type 2 or type 3, doctors said,” Carrie said. “They said she wouldn’t make it past nine months. She wouldn’t even see her first birthday.”

That answer did not settle well with the Ostreas. They sought every expert, researcher and scientist in the country to find answers and perhaps a cure.

Even after consulting with a top neurosurgeon in Texas who specialized in Gaucher disease, the family sent brain cells to researchers in Canada and Israel.

But all news was bleak.

The one thing the family did learn was that even though the specialists they had contacted were dedicated to researching Gaucher disease, there was little work being put toward the disease and even less funding.

“Parkinson’s gets about $63 million a year (in funding),” Carrie said. “Gaucher has gotten about $1.5 million in 20 years.”

Despite the cruel course the disease would run on her body, Hannah survived past her first birthday and even on to her second and third.

“She reached the development of about 20 months old,” Carrie said. “She would chase after the kids.”

But soon, Hannah started to decline, and most of the progress she had made began to fade.

“She could no longer roll over,” Carrie said. “She couldn’t really interact anymore, which was weird because she loved to laugh and smile and play. The last year was really hard.”

The family went to Disney World as part of a Make-A-Wish Foundation trip.

“She loved Mickey and Minnie.” Carrie said. “She got to meet them three times and just lit up.”

Around September 2011, Hannah’s condition worsened. According to new MRI scans, her brain matter had deteriorated significantly from where it was the previous year.

“The doctors gave us two options,” Carrie said.

Hannah could either undergo brain drilling to help relieve the pain or be put into a medically induced coma. Seeing that Hannah was in pain and that the brain drilling option was experimental, the family decided to take her home.

First, they met with Nathan Adelson Hospice’s pediatric sector. Hannah stayed at the hospice for three days until she was able to come home.

“She stayed with us for seven weeks,” Carrie said. “She made it through all our birthdays and Thanksgiving.”

On Dec. 4, 2011, with all her family in the house, Hannah died.

“You can’t say you have a plan for this,” Carrie said. “But she was home, surrounded by everyone who loved her with no machines. It was the right way for it to happen.”

Organizing the event and creating the foundation has been therapeutic, Carrie said.

“It keeps her at the forefront of our minds,” Robert said.

In addition to offering awareness of rare diseases such as Gaucher disease and connecting families to resources, the foundation plans to offer services for families, in particular siblings of children with life-limiting disorders.

“There are organizations and agencies for the child,” Robert said. “But resources for the siblings or the parents are few and far between.”

The Ostreas’ goal is to get the foundation running in Southern Nevada, start making progress in Northern Nevada and Utah by the end of 2013 and eventually take it nationwide.

“We just want to help,” Carrie said. “We want to do something that makes a difference in Hannah’s name.”

For more information, visit littlemisshannah.org.

Contact Henderson/Anthem View reporter Michael Lyle at mlyle@viewnews.com or 387-5201.

Two weeks and one day….

Hannah, 9 months old

Two weeks and one day until Hannah should be turning 4.

Two weeks and one day until one of the biggest projects of my life.

Two weeks and one day … yet the anxiety has been building up for weeks.   All my anxiety is focused on this day lately it seems.

I feel like I’m on this constant roller coaster between grief, stress, and anxiety.

How am I going to handle that day?  My baby girl’s birthday.  Is it still considered a birthday?  She will forever be three years old in my heart.  Three.   Can’t really say it is her 4th birthday – or can I?   She should BE here … WITH ME!

The anxiety about this event.  It has turned from this little event where we hope someone will notice to this huge community event with support from so many people we couldn’t even conceive of just a few months ago.  Radio stations, local TV media, popular kids entertainment companies, celebrities, local companies and people with huge hearts.

And the thing is, thanks to my amazing team and board of directors for our foundation, it is actually coming together!  There is no way I could have done this by myself.

So then the anxiety about the event begins — will everything work as planned that night?  Probably not, but hopefully it will be little.   Will people show up?  We have so many people spreading the word about the event ~ but people need to come join us that night for it to be a success.   Then the stupid things I stress about like not having enough cold water for our volunteers…I know, not a big deal, but yes, that is a stress too.

Then the thing that makes me the most anxious … how will I handle that night?  All those people coming to celebrate Hannah, to learn her story, to talk about her and the foundation, saying her name … on her birthday … the day I gave birth to her just four years earlier.  Part of me wants to run and hide from it all, but then the other part knows that I need to be there for Hannah, to celebrate Hannah, to show my pride that *I* was Hannah’s mom.

Yes, for way too short of a time, I got to be with my daughter, Hannah.  Physically, emotionally… ugh…

Fifteen days from today.  It is going to be a very, very emotional day for me.  I already know this, and I’m trying to accept it.  I just wish I knew what emotions were going to come out.  Will I be strong enough to make it through the entire event with a smile?  Will I be able to do my “thank you for coming” little speech?  Will I get overwhelmed with it all and want to hide?  Will I make it through the event just fine and then crash into a heaping pile of mess the next day?

I’m VERY excited about our event.  Not for me, but what it will mean to getting our foundation off the ground and actually start being able to help local families.   This is our shot — our chance to raise enough money and awareness to make a REAL difference in our community.   I need to be ready to tackle it all that night – whatever comes my way.

I’m ready to share the the world how special children like Hannah deserve to be fought for, to be comforted, to be recognized and given every shot for a positive quality of life, no matter their prognosis.

Two weeks and one day …

 

Mission and Passion and Help

The birth of a legacy – the launch of the Little Miss Hannah Foundation

The countdown begins until the launch of our Little Miss Hannah Foundation on July 25th.

July 25th, what would have been Hannah’s 4th birthday.

We have been putting SO much work into the development of our foundation — from incorporation to nonprofit status to licenses and permits and all of the other business end of things.   I have learned SO much about what it takes to build a nonprofit.

I’m anxiously excited for our event on July 25th.   The people that have stepped up to support and participate in this event is just amazing.   We have a professional Las Vegas DJ providing music for the evening, popular kids groups donating their time and services such as Lego robotic building and a dance show (not at the same time.)   The District management group also has donated and helped in organizing – we are taking over their entire shopping courtyard!
Most of all, the enthusiastic friends and family members that I have working so hard, volunteering their time and energy to help me make the Little Miss Hannah Foundation into a reality.   They are going above and beyond what I could have ever hoped for.

But it the end, it comes down to awareness and fundraising.   I need to raise money in order to provide the services I want the LMHF to be able to provide.  In this economy, especially in Las Vegas, it is a rough feat to try and accomplish.  We have had a handful of amazing companies open their wallets to sponsor our event, thank goodness.   But we need more.

I am reaching out to all of you. Those who have followed our journey.   Those who have been touched by Hannah.   Those who believe that I can succeed in my mission for the LMHF.

We need personal and corporate sponsors for our event - $1000, $500, and $250 levels.
We need raffle items for our event – $50 retail value or more
Paypal or check donations  to go directly to provide services

My inspiration, my passion ~ Abby, Hannah, and Ethan. We miss you terribly baby girl!

I need your help.  Help to make this event a success.  There are so many families here with children fighting for their lives, going through the same journey as we did with Hannah.

Please help me, through our Little Miss Hannah Foundation, provide support and comfort for our local families who are faced with losing a child.  We can’t change their inevitability, but we can help them focus on enhancing the quality time they have with their ill child.   We can’t do it without your support.

I have been told I have a hard time asking for help.  But as a good friend keeps reminding me, “if you don’t ask for help, the answer will always be NO.”

So here I am.  Asking for help to create Hannah’s legacy, to make a change in this world.