The Adventurous Life of Maggie Shae!: March 2014

Monday, March 10, 2014

Grandpa's Gift

Maggie with her Grandpa Tom, 1 day old - April 13th, 2012

Maggie in her Pavlik harness, healing from a broken femur

- 6 weeks old

Maggie being her silly self - 23 months old

Maggie on May 14th after suffering a broken shoulder blade from a fall at the park - always smiling

We're gearing up for our 2nd annual event created to celebrate the life of Maggie's Grandpa Tom Gottman (May 21, 1950 - Oct 21, 2012) by coming together for a day of golf, fun & generosity to raise awareness about Osteogenesis Imperfecta (OI). The OI Foundation's mission is to fund research, build public awareness, develop new resources, and support children and families living with OI.

Maggie's Grandpa passed away when she was 6 months old. Shortly thereafter friends and family came together to create this event as a way to honor his caring and fun-loving spirit, and to continue his legacy of generosity towards others. This is 'Grandpa's Gift'.

Today, Maggie may look and act like any other 2-year-old, but she will have OI for the rest of her life. Just recently she fell at the playground and suffered a broken shoulder blade. It had been nearly 2 years since her last break and we're just not sure when it will happen again. Doctors cannot predict this as well. This uncertainty is what children and families affected by OI suffer with each day.

You can read more about her story here.

It is through immeasurable love and support, prayers, great medical care and perhaps luck that Maggie did not have a break in over 2 years. However, there are children with OI who are born with multiple breaks, live with constant breaks and pain, and many families who lose children to this rare disease currently without a cure.

We would like help to change this, and we invite you to help make a difference too!

Our 2nd annual event is just around the corner, but we also have an online auction going on right now (ending May 27th)! Take a look at all of the amazing items that we have up for auction here, which have been donated by many very generous friends and family, community members and local organizations.

You can also "Like" the Grandpa's Gift Benefit Facebook page here for all future updates & news.

If you would like to read more about last year's event go here and here.

We are able to have this amazing event due to the generosity of our wonderful family, friends, sponsors and donors. Opportunities are still available to donate items to our live silent auction being held on May 31st. Please email jcgottman@yahoo.com or mpsheridan80@yahoo.com for additional details.

All funds raised from this event will go directly to The Osteogenesis Imperfecta Foundation, a small 501(c)(3) non‐profit organization based out of Gaithersburg, MD. The OIF is run by a handful of very dedicated and hard working individuals working to fund medical research, spread national awareness and ultimately help families. We have personally been touched by their continued support and invite you to consider supporting their mission.
Please visit here or send a donation to:

The Osteogenesis Imperfecta Foundation

Attn: Melissa Bonardi

804 W. Diamond Avenue, Suite 210

Gaithersburg, MD 20878

As always, thank you for your support!

Mike, Jessica& Maggie Shae

1st Annual Grandpa's Gift Golf Event - 2013 in Milford, MI

Adventures in Blogging...

At 6 weeks old, after a very low-risk pregnancy, our first-born child was diagnosed (very unexpectedly) with Osteogenesis Imperfecta (OI), or Brittle Bone Disease. OI is a rare disease with no current cure.

Understanding OI can be confusing. It is not black and white. Each case of OI is unique and each patient is affected differently. Although each person affected has one thing in common: weak bones that can often break easily - one person can have hundreds of breaks in a lifetime, while another only suffers a few.

There are still many questions to be answered about OI.

This disease is unlike any other and we, along with the medical community, are learning more and more about it everyday.

What we know for sure is that many people are confused by it, including many doctors and medical professionals. Through no fault of their own, many do not study it thoroughly (if at all) in medical school. We've had to explain it several times to medical professionals we've encountered at hospitals, including ER staff at well-known Children's hospitals. Many times we hear from these professionals, "oh, yes, I've heard of that," but many have never seen or treated a patient with it. This can be scary since even just handling a child with OI can cause breaks. These are the very significant issues with OI: awareness, education, training of medical staff and research.

We originally started this blog to communicate Maggie's daily progress and doctors visits more effectively with all of our family and friends. Most of the time we put a fun spin on it by having it written in her voice. We also wanted to help others who may be confused and going through this same initial shock, as we were. We searched for others like us and for any information we could find. Sadly, a lot of it was even more confusing and scary. Lastly, we wanted to give Maggie 'a voice' before she even had one.

However, now that we've been living with the effects of OI we've come to realize that raising awareness about this rare and underfunded disease is what really matters most. By spreading awareness, as is the case with many other "popular" diseases, the general public and medical community can become more aware of how to effectively treat patients, and, most importantly, development for much needed new treatments and a cure can be funded.

Our lives have been forever changed from what we thought our expectations of it were. We've had to rearrange our lives and our daily activities because something as simple as getting bumped into at a splash park can result in a traumatic public display and a visit to the ER with a compression fracture of the spine. Sadly, these events are not uncommon for most families living with OI.

But we are on a new path now and determined to always make the best of the situation. Knowing silly, sweet, smart, sassy, strong Maggie, anyone can understand this. We feel fortunate that Maggie's case has been labeled 'mild'.

It wouldn't be right to say all of this without acknowledging all of our caring family members, friends, medical professionals and perfect strangers who have come into our lives and shown us love, understanding and support each and every day.

We hope that others can find humor and solace in the everyday adventures that our little family stumbles through, find hope in our journey and, ultimately, spread awareness about Osteogenesis Imperfecta along the way. Thanks for helping us achieve this goal!

To find out more please visit: www.oif.org

Monday, March 10, 2014

Grandpa's Gift

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