V and I strongly believe in Paying-It-Forward, but there are a thousand and one ways of doing so and there are many people asking us to do so. It is a fact and many people have known for awhile but it is now official: Papa has gone crazy.
Indeed, I committed to cycling 700 miles (1126.5 km) from Natchez, MS (Where? Che es esto? Wat? Quoi? Ou?) to Cincinnati, OH in support of the HLH Center of Excellence.
The HLH Center of Excellence was created by Cincinnati Children's Medical Center and seeks to create global awareness around HLH, finance global research efforts on HLH and provide family support for those families affected by this illness:
Noelie would say: "CRAZY!!!!". And now that my deadline of getting my hiney on a road bike is approaching I realized that my three girls are correct: Mayday Mayday Papa is crazy....and obviously going down!! What the hell was I think ;) : Fat papa on a bike? So since a few days (maybe weeks or months) no more chocolate, no more beer (life is cruel), no more bacon or anything else that is good in life but now .... only cycling cycling cycling, water, veggies (yeurk!).
Every year Justin, http://www.matthewandandrew.org/, organizes a 700 mile bike ride in honor and memory of his sons Matthew and Andrew, who both lost their battle against HLH. Despite their great loss and horrible experience, he and his wife continue to support families as well as HLH research efforts. All proceeds of the bike ride go to support the HLH Center of Excellence.
Every day more and more children are diagnosed with HLH. It is an illness that is considered more aggressive than cancer by taking children in as little as a few weeks to at best a few months. The current average survival rate is still below 50% but what's worse is that it is estimated that for every child diagnosed 24 die misdiagnosed. Thanks to the efforts of foundations like the Akin Foundation in cooperation with The HLH Center of Excellence awareness is increasing and more and more children are being saved. Children all around the world are flown into Cincinnati Children's to receive treatment for HLH.
Therefore I have committed to cycle with Justin 700 miles (1126.5 Km) from Natchez-Mississippi to Cincinnati-Ohio for 7 days in September in honor of my daughters Miabelle and Noelie to raise awareness and raise funds for the HLH Center of Excellence. I may not make the finish line alive but if my little baby girl can survive HLH and a bone marrow transplant than the least I can do is get my hiney on a bike for 700 miles so maybe, just maybe, one HLH child can live to see another day.
I know you have done so much for us already for which we are eternally grateful, however your help in fighting HLH and helping other children survive would be greatly appreciated by us and the unfortunate families that WILL follow.
For donations or more information, please visit our donation page (international payments accepted):
All donations are tax deductible for US citizens and will fully benefit The HLH Center of Excellence created for the purpose of financing research, family support and awareness campaigns for children globally.
Please forward my cry for support to your friends and family and by doing so help us to create awareness and find a cure.
Help us save these children!
Thank you for all your support.
The Gillier Family