Pay It Forward with us

Over the years, our family has been blessed by several organizations, and it is our daily goal to “Pay it Forward”, offering help and support to others traveling this road with us. 

These entities have each, in their own way, touched our lives and our hearts.  They have not only provided the resources to cover a need we have, they have provided an opportunity for us to give back through volunteering and supporting their organization. They have allowed Michael and I to raise the kids with volunteering a regular part of their lives, and they have provided some amazing friends we cherish dearly. 

We are deeply indebted to each and every one, and hope you’ll join us in supporting these very worthy causes.
We grant the wishes of children with life-threatening medical conditions to enrich the human experience with Hope, Strength and Joy.

April 29th Is World Wish Day

Make A Wish came into our lives way back in 2001. Oh what a journey it has been!!! What started out as the blessing of the kids being able to have their Wishes granted… awe inspiring, amazing gift…..turned into a group of people we consider our second family.  A group we cherish.  And many more adventures because of them.

In February 2002, Madison’s Wish to go to Disney World was granted. While Make A Wish ensured every detail was thought of and taken care of, our little family, still reeling from hearing the kids diagnosis, escaped for a week to a fantasy world. We laughed, we played, and we lived.  Really, really lived.  It was a blessing to all of us…..more than a blessing though……it rescued us for a little while.  What I did not realize before her Wish was granted was how far reaching the impact would be, or that the memories would carry us through hard times for so many years.  14 years later it’s still remembered with the warmth and peace it held way back then.

In October of 2002, Chance’s Wish to go see the ocean and a volcano was granted with a trip to Hawaii. Both Oahu and The Big Island were on the agenda, and it was the most amazing 10 days of our lives.  We can still close our eyes and be back there, sitting on the North Shore, watching the waves roll in while eating the most amazing shrimp scampi ever made. It SUSTAINS us when we need to be sustained.

In January 2004 we embarked on Abby’s Wish to go someplace snowy, where we would celebrate her 6th birthday in grand style. Our little family spent a week in Keystone, Colorado learning how to ski & snow board, having snow ball fights, sledding, making Smores and celebrating a little girls very special day.  As the date of her 19th birthday approaches, the memories of our time there are incredibly strong and cannot help but make us smile…a lot!!

Make A Wish gave us the hope to continue living our lives fully….the strength to face each new day & challenge with the memories of the kids Wishes to keep us going…and all encompassing joy as we had these moments in time to escape the day-to-day craziness that is our life.

 Safety        Love        Respect        Empowerment
Our Mission
To honor the courage, strength, and determination of children and their families who battle life-threatening and serious illnesses; and to provide them with a safe, friendly, medically sound environment in which to simply have fun and be kids.

In the spring of 2009 we learned that there was a camp just outside of Seattle, Washington that was not only a medical camp, but one that had decided to dedicate a week to Mitochondrial Disease!! Against all the odds, with the help of so many precious people in our lives, we made the impossible happen and traveled to Seattle that summer for the kids to attend summer camp. It was a glorious week, and the kids came away from the experience stronger, more independent, with new friends, and with a confidence that we had not seen before. That week literally changed their lives.

The following year, Chance was asked to return as an LIT (Leadership In Training), AKA an assistant counselor, and again with the help of so many, we were blessed with another year at this place that would become a second home to us!! That year as LIT changed Chance's life again, and gave him direction like nothing else ever had.

In the years since, the girls continued on as campers, and also graduated to LIT's. Like their brother, this blessing in our lives changed them for the better. Chance graduated from LIT to full fledged counselor, and looks forward each year to being able to be a part of changing the lives of the kid's he has a chance to come into contact with when he is there. Abigail attended as a full fledged counselor for the first time this last summer, and like her brother, she is all about giving these kids a week as special and awesome as her time at camp has been for so many years.

While Madison is no longer healthy enough to attend, just being able to be on the sacred grounds, breathing the special air that we swear exists there, and giving back as often as possible allows her to continue her connection to this very special place.

Camp Korey is special, and provides something to kids with medical challenges that is difficult to fully define. We like to say it is the most magical place on earth, and for a week each summer, it continues to be one of the things that we work to make happen, because it truly means that much to our existence.
Houston's Ronald McDonald House offers loving, home-like environments, where families can find support and share experiences with others while on their journey to overcome a critical childhood illness.

fifteen years ago we traveled to Cleveland for the first time.  We were there to see a mitochondrial disease specialist, one of the few in the US, and about to embark on a wild journey.  We were traveling, with kids, to an unknown city, where we knew no one, to see a doctor that could tell us something we sincerely did not want to hear.  Finding and paying for a hotel was way down on the list of priorities, but finding someplace to stay was a necessary one. 

We were blessed to be able to stay at the RMH in Cleveland each time we were there, and it was because of this amazing Home we were able to be comfortable, safe, fed, and supported when we needed it the most.  Little did we know then, but it would start what would turn out to be a long relationship with the Ronald McDonald House Charities.

When we moved care to Mayo Clinic in Rochester, Minnesota, we were again in that same scary place of the unknown.  While we were not able to get into the RMH on our first visit there (due to construction), we were blessed to stay there the following two times we traveled for care there.  Again, just an amazing place, with phenomenal people, and it felt like home.

Finally, our true Home Away from Home, the Houston RMH.  We cannot begin to express our gratitude for this Home and the people there.  Because of this House and the people we have met there, my precious kids respond with joy rather than misery when they hear we need to head back to Houston again.  As their mom, I cannot begin to express what that means to me.  It is a home…..our home… the truest sense of the word.
Give Kids The World is a non-profit organization that exists only to fulfill the wishes of all children with life-threatening illnesses and their families from around the world to experience a memorable, joyful, cost-free visit to the Central Florida attractions, and to enjoy the magic of Give Kids The World Village for as long as there is a need.

Our accommodations (oh not even the word for this place) while we were in Florida for Madison’s Wish Trip was at Give Kids The World.  While I could read about it and look at the pictures online, no words or images truly do this place justice.  It is AMAZING!!!  And very much a part of the escape that these Wishes provide for the kids and their families.  Every moment of our time at GKTW was filled with love, support, and fantasy.

Madison still LOVES carousel’s, but as a precious 5 year old, she ADORED them, and she rode every animal on the carousel at GKTW, as often as she possibly could.  The joy on her face was worth the world to us, and the Minny Mouse she was given as we walked into the door of this amazing place still holds a place of honor in our home

Miracle Flights for Kids
Mission, Vision & Values
To improve access to health care by providing financial assistance for air travel to hospitals across America; to promote awareness of our services through targeted outreach programs; to enlist the help of community-minded people through strategic calls to action.

Whether it has been flights to Mayo, or to Cincinnati, this organization has made it possible for our family to travel to the care we have needed out of state.
Our mission is to promote research and education for the diagnosis, treatment and cure of mitochondrial disorders and to provide support to affected individuals and families.

Sixteen years ago, the word Mito was first mentioned in regards to the kids.  At that time, the UMDF was the only source for information and resources, and they came to my aid as I attempted to determine if this was something we needed to consider as a possible diagnosis.  It was through them that I was able to make contact with a local mom who had traveled this journey before me, and without her, there is no doubt our journey would have been longer and harder.  Not only do they help fund the limited research that is happening in this disease, they are the organizer of the only Mitochondrial Symposium in the US where families and clinicians can come together and learn more about this complicated, devastating disease.

Our Vision
MitoAction's vision is to create a community of support that reaches every child, adult, and caregiver affected by a mitochondrial disease.

 Another incredible organization that has made a difference in our lives, and provides incredible information and support to the Mitochondrial Disease Community.

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