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Jamie voss' Fundraiser:

"Austin's House of Mouse" 2nd Annual Mouse Race Fundraiser for Fanconi Anemia

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BENEFITING: FANCONI ANEMIA RESEARCH FUND INC

ORGANIZER: Patti

EVENT DATE: Oct 17, 2015

Jamie voss

THE STORY:

Patti Carter Hilbert wrote -

When:  October 17th, 2015   (5:00 p.m. - 11:00 p.m.)  Doors open at 4:00 p.m.

Cost: $20 per person (Includes beer, soda and snacks) You may bring your own food and liquor as well.  

Reserve tables available for groups of 6, 8 or more....please contact Patti at 636-578-1278.

Where:  Harvester Lions Club, 4835 Central School Rd., St. Charles, MO  63304

         

We are hosting our 2nd Annual Mouse Race Fundraiser for Fanconi Anemia in honor of our grandson, Austin Jaros-Riley who passed away from this rare life threatening illness at the age of 16 years old in February of 2013. There is currently no cure for Fanconi Anemia and our fundraising purpose is to help raise awareness and funds that will support research for a cure and help support other families who are affected.

Austin was born 2.5 months early and weighed only 2 lbs 1.5 oz. with many medical issues.  He spent the first 6 months of his life in the NICU at St. Louis Children's Hospital and many times was fighting for his life.  We were so happy when he made it past all the medical complications he was born with and thought that the worst was over.  He was born with a floating thumb on one hand and we knew around the age of 18 months they were going to have to amputate his dangling thumb and move his index finger over to make a thumb and functional hand for him as he grew.  Austin had his hand surgery very close to being 18 months old and you would have never known he was missing a digit. Later in life he could master the piano and video games with only 4 digits on one hand like anyone with all their digits. What we didn't know was that he was misdiagnosed at birth with Towne's Brock syndrome only to learn at the age of 3.5 years he was developing leukemia cells which caused a test to be performed that revealed Austin had a life threatening illness called Fanconi Anemia.  This meant that he would need a bone marrow transplant as soon as a donor could be found in order to save his life at the age of 3.5 years.  We were devastated when we learned there was only a 13% survival rate at that time for Fanconi Anemia transplant patients.  Austin received his bone marrow transplant from a non related donor from Weber City, VA named Dan Gmyrek.  The transplant went well thanks to our gracious Lord and lots of prayers and a very generous donor.

 One year later we were blessed to meet Austin's donor, Dan & his wife Jeanette (now deceased) whom over the coming years we were able to develope a strong and loving bond with the Gmyrek's. Dan was a pharmacist and a private pilot and once on a vacation to Virginia, Dan took Austin flying with him and he absolutely loved it.  Of course Austin knew no fears ever.  We shared many other visits with Dan and Jeanette over the years. At the age of 5 years Austin went on his Make-A-Wish trip to Disneyland with myself, his Mom and his Aunt Stacy and he thought he owned the placed by the special treatment he received. He loved it and so did we. We thought he had beaten the odds once again and thought Austin would finally have a somewhat normal life.

 For several years Austin did get to do what most kids his age got to do.  He loved baseball and played on a team with kids his age until his short stature (one of the attributes of Fanconi Anemia) became an issue with his size and the possibilities of an injury.  He then joined the Challenger Baseball League where kids with disabilites could still enjoy their interest in baseball.  Austin was an avid St. Louis Cardinal's baseball fan and we attended many games together. He knew some of the players personally and many of the workers at the stadium. Austin had a favorite stadium worker and she always let Austin sit in a better seat than our ticket allowed.  He attended a local camp named Camp Rainbow for kids with cancer and blood disorders from age 5 until 16 years old.  He also attended Camp Sunshine in Casco, Maine for kids with life threatening illnesses every year from 5 to 16 as well.  These were two of his most favorite places and he touched so many lives in both places over the years.   In 2008, Austin developed graft vs. host disease of his liver and was put on a 2 year treatment with many medications in hopes to stop the GvHD from advancing.  After 2 years we stopped all meds but Austin's blood counts were not returning to the normal ranges. He developed portal hypertension of his liver which is a large blockage to the main portal of the liver and carried low platelet counts which kept him at risk for internal bleeding or hemorrhages.  He no longer could do activities that would put him at a bleed risk so his quality of life became much less. He survived one internal bleed after a surgery was performed to stop the bleeding but the risk for another was always present.

In 2010, I met my now husband, Mike Hilbert.  He was such a blessing to both Austin and I and supported us and stood by our sides through everything.  Since Austin was limited on his activities, Mike helped Austin join a youth bowling league and him and Mike would go every Saturday morning to the bowling alley together.  We encourgaged him to take up piano lessons because he had such a love for music and was really good at it and he eventually started writing his own songs.  He could listen to a song and 15 minutes later would sit at his piano and would teach himself how to play the song he just listened to.  He loved music and became the DJ at his youth church where he was a youth member.  

Austin had a love for God and belonged to two churches, Grace Church in Maryland Heights and Element Church in Wentzville,  In November 2012, he asked to be baptized at Element Church which he did in November of 2012 and we are so thankful for his faith and belief in God.  

At this time Austin's bilirubin counts were becoming extremely high and he was very yellow in color which meant his liver was failing.  Around Christmas time he started retaining fluid in his feet and legs and could not wear his shoes and spent much of his time lying with his feet elevated.  He loved Christmas though and was determined to be with his family for the holidays and not in the hospital.  At the beginning of January, 2013 Austin began vomiting and could no longer hold anything down. They inserted a tube in his nose that led to his stomach to help drain the fluid and acid that was building in his stomach.  He continued to worsen and spent the entire month in the hospital.  He was becoming weaker each day and eventually could not eat at all and had to have a central line put in to feed him. His liver enzymes began to increase in numbers and he became more jaundice with time.  He was a fighter and even though you could see the tiredness and pain he was having, he never once complained.   He was incredibly strong and brave through all of this and on February 3, 2013 Austin lost his battle with Fanconi Anemia due to liver failure. He left this world only weighing 32 lbs and 51 inches tall but his courage and fight to the end left such a huge impact on so many lives. Our hearts were broken as we stood by his side helplessly watching and never wanting anyone else to ever endure this kind of pain.

 Unfortunately, with this disease it does happen all too often and many of these kids and young adults never have a fair chance at life. We host this event to continue Austin's fight in helping to hopefully find a cure one day for others who are still battling this disease.

The night consists of 7 mouse races, Mouse Roulette, Chuck-a-Luck, raffle baskets, auction items, attendance prizes, snacks, beer and soda provided, music and a night filled with excitement and friends.

There are several ways you can help our cause:

Become a sponsor.....we have three types of sponsorship

  1. GOLD SPONSOR - Mouse "race" business sponsors (6 sponsors needed) - sponsor a race for $100 - your business card will be printed on the front of our evening placemats and your business card will also be displayed on our large screen throughout the event.
  2. SILVER SPONSOR - Individual event sponsor - become an individual sponsor for a $50 donation and your name will be displayed on our large screen throughout the event.
  3. BRONZE SPONSOR - "Mouse" sponsors - choose 1 of 36 mice racing during the evening event and sponsor that "mouse" for a $20.00 donation (pick a mouse name below to sponsor).

Romeo - Big Al - Flash - Tiny Dancer - Oreo - Lucky Louie - Whiskers - Pedro - White Thunder - Champ - Mousin Around - Mr. Cheez - Old Geezer - Mitty - Rusty - Hot Pants - Scooter - Speedy - Gus - Peanut - Lightning - Lee Lee - Velvetta - Secretariat - Speedy Ninja - Little Bullet - Stud Muffin - Dozer - GMoney - Angel - Heido Ho - Rat-a-2-e - Cheerio - Clyde - Thumbelina - Cruiser

Attend the event and enjoy an evening filled with excitement and friends.

If you cannot attend and would like to make a donation you can do so by clicking on the donate button to the right or if you prefer you can make a check payable to: Fanconi Anemia Research Fund and mail it to me at Patti Carter Hilbert, 31801 Chestnut Court, Foristell, MO  63348.

Please be sure to mention "Austin's" name when making any donations.

We are also in need of donated items for our basket raffles and silent auctions. If you have an item you would like to donate please email me at patticarter22169@yahoo.com 

All donations will receive a tax deductible donation letter sent by the Fanconi Anemia Research Fund.

COME PLAY FOR FA and help save lives and support our cause!!!

For more information on Fanconi Anemia visit our website at fanconi.org

 

Thank you for all your continued support.

Mike and Patti Hilbert & Marti Pearl (Event organizers)

 

 

 

 

 

The Team: $350 TOTAL RAISED SO FAR

JOIN THE TEAM
Fundraiser Title

Patti Carter Hilbert

Amount Raised

$250

 

3% Raised of $10,000 Goal

Fundraiser Title

Mike Hlbert

Amount Raised

$50

Fundraiser Title

Carrie Riley

Amount Raised

$50

Fundraiser Title

heather capuano

Amount Raised

$0

Fundraiser Title

Jamie voss

Amount Raised

$0

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