Mattie Miracle 9th Annual Walk & Family Festival -- Raised over $97,000

Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with us, and most importantly thank you for keeping Mattie's memory alive.

As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter

The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

The Mattie Miracle Cancer Foundation was created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: and take some time to explore the site.

We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:

.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!

A Remembrance Video of Mattie

Random Shots of Mattie, Family and Friends

April 27, 2012

Friday, April 27, 2012

Friday, April 27, 2012

Tonight's picture was taken in May of 2009. It captures the energy and zany way Mattie did physical therapy on the pediatric floor. Without an entourage, all of these great accomplishments would never have occurred. In this scene, you see Linda (Mattie's Child Life Specialist) pushing Mattie's IV pole, which was a feat in and of itself, since the thing weighed a ton, and you had to move it carefully so it did not pull on the broviac or central line coming out of Mattie's chest. However, on the left were Anna (Mattie's physical therapist in purple) and Meg (an amazing child life intern), who became Mattie's racing buddy. Remember at that point, Mattie had 3 limbs operated on (right and left arms, and right leg) and he needed to relearn to walk as well as regain strength. Anna created an obstacle course for Mattie on the pediatric floor, and in this portion of the course he had to use a bat and knock down the animals off the plastic bricks. As you can see Anna was blocking Meg, so that Meg couldn't knock down the animals before Mattie. Perhaps you could have figured this out from looking at the picture, but I not only see the scene in the picture, I can distinctly recall it and its sounds in my mind.

Quote of the day: The purpose of life is a life of purpose. ~ Robert Byrne

My dad sent me this quote, and today my purpose was clearly to learn about the ridiculous permit policies created by the City of Alexandria. Why am I bothering myself with this? Well our Foundation Walk, for the past three years has been held at Mattie's school, which is located in Alexandria, VA. This year the school brought to my attention that I would need to comply with Alexandria City ordinances, which requires anyone hosting an event open to the public on an Alexandria City property (even if it is private property) to file for city permits. That may sound easy enough, after all, in today's day and age, such applications should all be on-line and paying for these permits should be electronic as well. FORGET IT!!! Nothing about this process is easy, streamlined, or can be done electronically. In fact, MOST of the applications are not even available on-line, which means that I will need to visit City Hall and find an individual who is willing to work with me through the process.

Mind you we are NOT talking about just one permit. So far here are the listing of permits I need to apply for and keep in mind each one has a FEE associated with it: 1) Special Events Permit, 2) Fire Prevention Permit, 3) Open Flame Permit, 4) 2 Department of Health Permits for food, 5) Electricity Permit, 6) Temporary Building Permit (this one I LOVE, apparently our Rock Climbing Wall constitutes a temporary building!!!!!), 7) Noise Permit, and 8) A Stage/Riser Permit. Some of these permit offices are not housed together, so it means dealing with different offices and people. In addition, to the permit applications and money, on the day of the event a fire marshal and health inspector will be on site examining our set up and food. If all of this isn't bad enough, I have to tell you that in fees, the Foundation is paying the City of Alexandria at least $1000. Not only do I resent the bureaucracy of this, I particularly despise knowing that money which could be going to helping children and families, is going to support this permit factory.

I am all for protecting the public, but each vendor we bring into our event is a professional, they have their own liability insurance and work very hard to make sure that everyone in attendance is safe and secure. What this is telling me is the City of Alexandria apparently feels that organizations and private companies who provide food and entertainment need to be regulated by them and the bottom line is they care and are concerned about their own liability. I am not sure why other groups are not shouting from the rooftops about this, but I think asking for non-profits to pay such fees is not only unfair, it simply robs charitable groups from effectively meeting their missions. I personally feel this $1000 would be better spent by the Foundation, than by the City of Alexandria, and I resent this time consuming paperwork and legwork that I will need to complete ASAP to qualify for all these permits.

The irony is Mattie's school just found out about the need for permits in the Fall. The school itself has to request permits from the City, even for its own events. Mattie's school is trying to learn the procedures necessary to follow, and in turn they are trying to assist me. But at the end of the day, I am the one who will have to fight City Hall (never thought I would be writing this statement on the blog!). I left messages for people today at City Hall, and naturally no one returned my calls. So I need to find the energy to be pleasantly persistent, but honestly this energy would be better spent planning the walk. There is one of me, and yet I feel like the City is asking me to split myself in half in order to now jump through their hoops.

Nonetheless, I realize the Walk is a vital part of our Foundation fundraising, so the City of Alexandria has got me this year. My first visit to City Hall is on Monday, and with me I am armed with as much information as possible. I feel non-profits work hard enough and asking us to apply for permits adds a whole other layer of complexity. A complexity which I imagine will detract groups from having events in Alexandria City and thereby decreasing non-profits' effectiveness to meet the community's needs.

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