In ASIA - Everyday is Wishbone Day!

It’s been five months past Wishbone Day but its essence still lingers and the realities of developing and poor resource countries are still etched on my mind. Asia is a very diverse region, and with the technology of social networking, OI families in our region are now connected , thanks to Wishbone Day and facebook. It is where the families share their experiences (good or bad), ask questions (simple or not so simple), and gives encouragement and support to those who are feeling alone and in doubt.

It is a challenge for us to raise OI awareness in our region, to reach out to other OI families and bring the positivity, that sometimes, is the only thing that keeps some families going (yes it’s true!). Raising OI awareness is not just a one-time thing. It doesn’t end after Wishbone day. It is a continuous process, a lifetime commitment for most of us. But still, the root of our problem is the lack of it.

That’s why we have to make everyday feel like Wishbone day. Every opportunity to involve others and raise awareness counts. Be it in our children’s school, hospital, friends and classmates. Every person oriented, can be another source of information for others. And so the chain of information starts with us and ends up at infinity. Through this we can make a difference one step at a time.

Jeneth Catapang
Wishbone Day Liaison - Asia
asia@wishboneday.com

Wishbone Day 2012. World Osteogenesis Imperfecta Day in Spanish-Speaking Countries

A day in the calendar for wearing yellow.

Once again this year, the international community grouped around the osteogenesis imperfecta celebrated on 6th may the "Wishbone Day" or "World OI Day" and Spanish-speaking countries also took part in the celebration.

Our OI Hispanic community covers the American continent, from Mexico to Argentina, and Spain, in Europe. We are a community with specific ties based on the OI and the language. As you know, in all of these countries, the same language is spoken since 1492, when Christopher Columbus discovered the American continent for the Kingdom of Castile, in Spain.

Wishbone Day was born on 2010, in Australia, and it has been especially spread through the Internet. This is the third year that it is celebrated. I must admit that it's incredible the fact that the celebration has been spread so quickly, especially in our international community of affected people, parents and friends related to OI.

Personally, I have had the privilege of liaising with the Wishbone Day Team for Spanish-speaking countries this year.

The work of a liaison for the Wishbone Day consists of contacting people and Associations and motivating them so that they celebrate the World OI Day on 6th May wearing yellow and spreading a positive message in relation to what means a life with OI. So simple and so complicated at the same time.

At the moment, our main means of spreading the word about Wishbone Day, is the Internet. Where there is no Internet, it is more difficult to get the message across there.

From my perspective, it is easy to see the differences between the celebration of Wishbone Day in our Spanish-speaking countries and the celebration in other countries.

In the Anglosphere, the Associations of OI are principally Associations of patients. In our Spanish-speaking countries, there are principally parents' Association who are united to get treatment or better opportunities for their children. This means also a different way of focusing and facing the Wishbone Day.

In the Anglosphere, the typical celebration of Wishbone Day is a celebration in family or with friends. But in our Spanish-speaking countries the importance of parents for organising a party has no limits. This is evidenced by the celebrations that take place in Mexico, Panama or Spain.

In short, this is what happened in our Spanish-speaking countries last 6th May:

Mexico
The Foundation Angelitos de Cristal organised an outdoor party that combined Wishbone Day, Mother's day and Children's Day at the same time.

Panama
The OI Panamanian Foundation celebrated on 6th May a party with an human chain and a march by the CintaCostera.

Peru
The OI Peruvian Association got the members of the Association together in its head office to celebrate a party. The occasion was also used to celebrate Mother's Day.

Spain
In Spain, Ahuce (Brittle Bone Disease Spanish Association) and Amoi (OI Association of Madrid) carried out several public events. Some members with entrepreneurial spirit decided to organise some special events that day:

Information stand of Ahuce, in the Medieval Market of the city.
Talavera de la Reina (Toledo)

Information stand in Otura, Granada.

Picnic in the house of M. Barbero, in Tarragona.

Children's workshop in a school. Beniel, Murcia.

Sport activities to spread the OI, in Torrelavega,
Lucas' homeland, our most famous child with OI.

Municipal Band from Valencia de Don Juan,
in concert for the 6th May.

All of them are good ways to celebrate 6th May. The organisation of Wishbone Day only asks for this day to be useful for spreading a positive message about what can people with OI do. Anything else?

It is necessary a minimum of protocol. A minimum of elements that identify us, like a group, celebrating an international specific day: wearing yellow and using the logo. Anything else?

I think so. Every person and every group have specific reasons for wearing yellow on 6th May and all of them are valid. Some people will celebrate that life is beautiful and that it is beautiful having friends and other people will take advantage of the opportunity for raising population and public authorities awareness to their necessities. There will be even people that use the day for daydreaming with the hope that a research team, somewhere, gets eventually a cure. Why not?

When we know better, we do better.

Since joining the Wishbone Day 2012 team and taking on the role of Regional Liaison for North America, Wishbone Day has brought me a great sense of pride and connection. It has helped me find my stride in creating greater awareness for Osteogenesis Imperfecta.

There is an old saying that says "when we know better, we do better".

At the end of the day if I have made one more person aware of OI that may have never before heard of it, then my job is done.

Heather Anderson
North America

Wishbone Day - about changing perceptions!

Hi there!

My name is Brianna Hartmann. I have OI and I am also a pre-med student.
What does Wishbone Day mean to me?

To me, Wishbone Day is about changing people's perceptions of people with OI as well as raising awareness. I have spoken to many conferences of physical therapists, occupational therapists, doctors, medical students etc, about my experiences with OI. I do this to raise awareness within my medical community and colleagues and also to show that sometimes perceptions of living with a medical condition isn't always right.

I have been a cheerleader, in a marching band, part of a science team and much more. I want people to know that people with OI can do anything they choose!

Wishbone Day is another way to get my message out there - people with OI are not limited. Awareness really does make a difference! And I'm looking forward to 6 May 2013 next year!

Brianna Hartmann
Minnesota USA

The long awaited Wishbone Day 2012 video

Finally, the long awaited Wishbone Day 2012 video is here.!

Many thanks to Ann Barnes for volunteering her time to put together this compilation of 2012 Wishbone Day photos in my absence.  A great big thank you to those who submitted their photos by tagging Wishbone Day on our public Facebook page or submitted their photos directly via our photo dedicated email address.  Your efforts to share your Wishbone Day celebrations with the world are outstanding.

We'd love to hear more of your Wishbone Day stories.  Send to info@wishboneday.com so we can share them on our website for others to enjoy!

YELLOW a symbol for Wishbone Day and OI just like pink is a symbol for breast cancer

As we were preparing for yet another surgery I am reflecting back to the last few months. Wishbone day excited Kayte this year. From Early January when she began working on her science fair project, she KNEW she wanted to do something about OI so she could promote Wishbone Day. The events of Wishbone Day made her feel so special. She did great advocating for awareness. 

Thank you to the Wishbone Day team for planting the seed. I don't think any of us realise how big Wishbone Day will be one day. I truly believe most people will one day associate YELLOW with OI and Wishbone day, just as pink is a symbol for breast cancer.

THANK YOU for your hard work and dedication to the OI community!

Michelle Hoppe
Proud mum to Katye

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Do you have a Wishbone Day story you'd like to share?

Send it to info@wishboneday.com with a photo.

People should celebrate Wishbone Day because it's a party for my bones!

“Hey JuBee! Why is Wishbone Day important?” My spunky kid (again decked out in yellow well before May 6^th) replied, “Becaaaause I’m special mom!” I think that pretty much captures why we celebrate Wishbone Day. For us, Wishbone Day is a celebration of triumph through challenges. Of course, it’s about raising awareness of Osteogenesis Imperfecta, but our celebrations are focused on rejoicing about all the magnificent things that happen between fractures. That’s the stuff that makes our Ju special! Between the umpteen medical appointments and incessant mounds of paperwork to “manage OI,” Ajani has learned to climb a tree, make scones, ride a bike, skip, pop wheelies in his chair, clip coupons, read simple words, reciprocal climb stairs, count and add, check out library books, swing on the monkey bars, season chicken and self-advocate.

Ju’s such a confident, happy kid and he just loves to engage people. Right now, he thinks that any and everybody he sees in late April and May “is wearing yellow for Wishbone Day too Mom!” and most people “have bones like me.” I am so pleased that Wishbone Day gives him another opportunity to celebrate himself and all that is special about him. In Ajani’s words, “People should celebrate Wishbone Day because it’s a party for my bones and they can learn how to be my friend.” Atta boy Ju!

-Aiesha Oliver

Proud mom to the fabulous “almost five” JuBear: Adventurous bug hunter extraordinaire who happens to have Type III OI.

Wrongful accusations: Why awareness makes a difference!

We had a 3 year old at home named Corey when our baby girl was born. We live in Canada - A place that people think wrongful accusations would never happen!

(this is the first time I have ever shared our story so publicly, I just think it’s now time).

20 months ago we were blessed with a beautiful baby girl we named Claireese.

We took her home from the hospital three days later and headed back into the ER that night after fracturing her femur while changing a diaper. They admitted us to the hospital and decided that our story was not legitimate and concluded that Claireese had been abused.

Social services ordered x-rays on our brand new baby that resulted in her being exposed to 97 films of radiation. They also ordered blood work (something we have never been able to get to this day because of her small veins) and pinned her down and tortured her through this procedure. We believe this was when her arm was fractured - discovered later on.

Claireese had approx 12 fractures. Some we never knew of until later on when they showed up healed on x-ray. Child services determined this was abuse and we spent the next few weeks trying to prove that we deserved to keep our children.

A doctor actually told me at the Hospital that if I told child services I had dropped her, this would all be over with, there would be nothing they could do. Heartbreaking that lying to try and keep our kids where they belong was going to be our only option. RCMP escorted Doug and I out of the hospital and took us down to the police station where we were both harshly interrogated.

Meanwhile Claireese's sclera was so dark it looked like she had no white of her eyes, just pupils. My mom Googled broken bones in newborn and "Osteogenesis Imperfecta" came up. It said that "blue sclera and unexplained fractures" were key signs. She printed this off and brought it into the hospital and our pediatrician took one look at it, pointed out the “1 in 50 000 odds”, handed it back to us and said "very unlikely".

It took weeks of us proving to a social worker that we were good parents and that something needed to be done. The hospital put in their report that "All tests have been run that would rule out abuse and everything has come back clear therefore it was being determined to be abuse." After weeks of fighting for our kids, our Social worker (who was as wonderful as a social worker trying to take your kids away could be) got us testing at Children’s Hospital in Vancouver for Osteogenesis Imperfecta.

When we went down there, they clinically diagnosed her that day and we were cleared from Social Services. That day we learned that our baby girl had a very rare brittle bone condition - Osteogenesis Imperfecta. We were lost. NOBODY knew what OI was and our little girl had it. Nobody could answer our questions, nobody we knew had it, and it was awful.

We took matters into our own hands and things started to change for the better. We got a proper diagnosis. We found a wonderful support group that has helped us through more than they will ever know. We found the leading OI specialists in Montreal and were able to get Claireese to their hospital where she now goes for all her care along with many other children from all over the world with OI. In Montreal they are able to treat her like a child and not an experiment to learn more about brittle bones.

We know that all of this could have been prevented if people including medical professionals were more aware!

We're thankful for where we have got, by putting up a fight and refusing to accept NO as an answer. We are thankful for all our family and friends that have stood by our side day in and out through it all.

So after reading our story, we hope that you remember to wear yellow on "WISHBONE DAY, 6th MAY" - a day for raising awareness for osteogenesis imperfecta. A day to recognise our little Claireese and all her friends with OI.

Because awareness does make a difference and we stand beside that.
So can you!

The Bourque's

What is the difference then (2010) and now (2012)?

Awareness makes a difference! This is the tagline for Wishbone Day.
We see it on facebook, twitter, on the website, in the videos, on t-shirts and flyers. But what does it really mean? and What does Wishbone Day mean to me?

Let me share with you how Wishbone Day has made a difference to me personally - as a parent and a Wishbone Day Regional Liaison as well as to our OI support group here in the Philippines.

Back in 2010, it was the Wishbone Day t-shirt which was the very first thing that drew our group here in the Philippines together. Wishbone Day gave us a sense of belonging and confidence that there is something to look forward to. It gave us hope that our children could have a better quality of life and that we as parents can actually do something.

Almost two years on and with the support and guidance of the staff at the Institutes of Human Genetics (IHG) at the National Institute of Health, we are still here, bigger and stronger with a positive outlook and smiles on our faces as we celebrate Wishbone Day in 2012. Besides our group at the Philippine General Hospital, we now have four Satellite Infusion Centers in the different areas of the country. This was possible with the dedicated efforts of our doctors at the IHG, the cooperation of the attending doctors at the satellite infusion centers and the trust of the parents.

Awareness in our country made a BIG difference! It gives us hope and confidence, that even a third world country like ours, we can step up and rise above the challenges that OI brings with a positive attitude!

Awareness has lifted us from confusion and passivity to positivity and reality. As I have always said, this is the best gift that we can give to our children and the generations to come.

It is my pleasure and honour to be part of the first Wishbone Day Team in 2012. I have enjoyed our Wishbone Day Headquarters workspace on Facebook and the friends I've made there. I have learnt so much from Jo and the team as well as from the fellow Asians I have the privilege to communicate with, about Wishbone Day and OI.

Raising awareness is so much more than plain, simple telling people something. You touch people at a deeper level. It's about giving parents, kids, adults and community something deeper and helping them realise, Wishbone Day is more than an individual thing - it is for ALL of of us. I have enjoyed the journey this year. It has been exciting to see not only the developments in the Philippines, but also in Nepal and the difference Wishbone Day has made to people in that country as well.

Congratulations to all of us!



Jeneth Sabay-Catapang
Wishbone Day Liaison - Asia
asia@wishboneday.com

Wishbone Day changed our lives - for the better!

Hi there...We are from Washington State, USA. Let me tell you how Wishbone Day has changed our lives - for the better!!

Yellow is her new favourite colour!

My daughter is six yrs old (type IV). As her parents, we had experienced a long and traumatic series of accusations of child abuse. It wasn't until she was 14 months old that she was finally diagnosed with Osteogenesis Imperfecta. We have been through a lot with different doctors in our area, so there are still big trust issues with the medical professionals we come into contact with.

We have gone to the last two U.S. OI conferences and I felt the love and support from other parents who have children with OI. It was just a wonderful experience for our whole family. We had just decided to go to the upcoming conference this July, when I went on Facebook looking for the OI parent group and other support and there it was yellow, yellow, yellow!!!!

I started to watch the videos on the Wishbone Day website and have yet to dry my eyes!!! I knew we had to do something! With only four days to go until 6 May, I started by sharing anything and everything I could on Facebook and encouraged my friends and family to do the same.

Yellow Wishy Cupcakes!

Our quote was, "Just one click makes a difference"! I was scheduled to work the whole weekend but I managed to hand paint six OI t-shirts for our family, make buttons, flyers along with 150 yellow/wishy cupcakes for our neighbours and for both my husband's and my workplaces!!! We delivered the cupcakes and informed new and old neighbours of Wishbone Day! Then we hit the town, wishing everyone Happy Wishbone Day and sharing information about OI!!!

We had a blast and brainstormed all day of what we are going to do next year! We can't wait to get our community involved and have a huge celebration next year! I am so grateful for Wishbone Day!!!

It's a fun and exciting way to spread information that is positive and something my daughter can be proud of!!!  She has informed me that yellow is her new favourite colour and she wants Wishbone Day printed on everything yellow!!!!

For this very happy mamma, I feel empowered now to help educate my community to hopefully support and connect with other families dealing with OI.

"Awareness makes a difference!"
It sure did in my life and I thank you!!!

Our Family Spreading Awareness!

Stephanie Lutz

A very happy Mamma

Over 250 hand painted messages of support and love for Lucia

Cordoba, Argentina.

The town of Alice is Lucia home ... she is a beautiful girl who lives with Osteogenesis Imperfecta. Her strength of will, her contagious laugh and her vitality motivated us to mobilize and join the Wishbone Day celebration and share with her and other children: games, plays and music, organized by young people of secondary and other institutions.

At the end of the day, Lucia was admitted to hospital for corrective surgery. She took with her the best memories, letters from friends and a flag with over 250 hand painted messages of support and love.  Awareness makes a difference!

Join our Wishbone Day family! Wishbone Day, Queensland

A beautiful fine day was celebrated at Southbank in Brisbane, beside the Brisbane River. 38 people joined us in making a successful Wishbone Day... We had people from Cairns, Rockhampton and Northern New South Wales.

We had balloons,signs, brochures, skeleton, shirts and cake and lots of yellow food. We had so many people come up to us wanting to know more about OI - what it was, etc. We were competing with the Buddha Festival for parking. That proved to be a bonus! It just brought more people to our party!

One young lady who had never met anyone with OI besides her mum and grandma, saw our signs and was blown away! She has now joined our OI Family. Awareness really does make a difference.

New friends were made, parents with young OI kids met other parents, mums with OI who have had children and about to have children met.

Wishbone Day is making a such a positive difference for our next generation and we can't wait for next year!!!

Raechel Richards

Queensland Representative
OI Society of Australia

Wishbone Day 2012 -- Sydney style

Since Wishbone Day began 3 years ago it has grown in size and creativity.  Each year we see bigger and brighter Wishbone Day celebrations!  This year was no exception!  Wishbone Day 2012 was HUGE!!

Wishbone Day Sydney was held at Darling Quarter, Darling Harbour and was our largest Wishbone Day celebration ever!  Our Wishbone Day celebration was an open community picnic day with perfect sunny Sunday weather, great company including an awesome jazz band.

Just when we thought it couldn't get any better, we were treated to a surprise Wishbone Day Flashmob.  Organised by Occupational Therapy students from the University of Sydney,  the Flashmob was performed to song Price Tag which was the song featured in our previous Wishbone Day video.  It was such a fun and interactive way to bring more awareness to our Wishbone Day gathering. As the flashmob grew, so did the crowd!  

We were thrilled that Wishy made it home from his world tour just in time to join our Wishbone Day celebration.  He met many new friends and helped us raise awareness by handing out Wishbone Day postcards and sharing the Wishbone Day Poster Series with passers-by.

Another surprise visitor was Alvin.  Alvin joined us in Sydney while his family celebrated Wishbone Day in the Philippines! It was great to share Wishbone Day with him this year.   

(Alvin celebrating Wishbone Day in Sydney and his family celebrating Wishbone Day in the Philippines)

Wishbone Day Sydney was a fantastic time. Thank you to all who joined us and for making it such a special day.  A special thanks also to Ann Barnes and Adriano Carrideo for being our photographers on the day and for helping us capture memories of Wishbone Day 2012.

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How did you celebrate Wishbone Day?

Share your story about Wishbone Day.  

Send your story and a photo to info@wishboneday.com

Wishbone Day 2012

In true Wishbone Day style our OI community turned the world yellow on Wishbone Day 2012.  One thing we have learned for sure over the last 3 years is that our OI community are amazing awareness raisers!

Check out these creative efforts to raise awareness of OI and Wishbone Day!

Our Wishbone Day supporters -- 

MAKE

BAKE

DECORATE

EDUCATE 

 CELEBRATE

We'd like to thank all those who wore their yellow to recognise and celebrate Wishbone Day and for the overwhelming enthusiasm to raise awareness of OI around the world.  You make a difference!

Watch this space for stories, photos and the long awaited Wishbone Day 2012 video - coming soon!!

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If you'd like to share your Wishbone Day story 

send it via email at info@wishboneday.com