Hayden's Hope

Thursday, June 26, 2014

25th Anniversary of the International FOP Association

Fibrodysplasia Ossificans Progressiva (FOP) is one of the rarest, most disabling genetic conditions known to medicine. It causes bone to form in muscles, tendons, ligaments and other connective tissues. Bridges of extra bone develop across joints, progressively restricting movement and forming a second skeleton that imprisons the body in bone.  

In the US, a disease is considered rare if it is believed to affect fewer than 200,000 Americans. Currently there are 285 confirmed cases of FOP  in the United States and 800 cases world wide. 

In 1988 the International FOP Association (IFOPA) was started by one amazing person afflicted with FOP, Jeannie Peeper.  

As a young woman, Jeannie knew that there must be other people with her condition out there and wanted to be able to connect with them.  

For someone with a rare disease isolation is typical, however Jeannie persevered and started a pen pal group with the few people that she knew also had FOP.

Through Jeannie's efforts and those of numerous volunteers, today there are 500 members of the IFOPA worldwide representing over 50 countries.  

Through Jeannie's vision, today the IFOPA provides education, member support, advocacy and research funds to the FOP lab at University of Pennsylvania.  In 2006, the lab at University of Pennsylvania discovered the FOP gene  and today continues to do groundbreaking research on the quest to find a cure for FOP.

Hayden's Hope is proud to fundraise on behalf on the International FOP Association.

Please click here to read an exclusive and amazing interview with Jeannie Peeper, the founder of the IFOPA.  
Jeanie Peeper, founder of the IFOPA  and Dr. Frederick Kaplan, head of the FOP Lab

Sunday, June 15, 2014

Tis the season

One of the proudest moments of being a parent is watching our children graduate, whether from kindergarten, 5th grade, 8th grade, high school, college and for some even grad school.......of course by that time you're broke and proud :)

This past week Hayden graduated from 8th grade at Mount Tamalpais School.  Three years ago, if you had told me that this lifetime milestone would happen to him, I would tell you that sadly it probably wouldn't.    However, as usual, Hayden surprised us all and is going on to high school with a big, big smile on his face.

Post Ceremonies Smile
Hayden's life has been blessed with so many wonderful people….family, peers, teachers, doctors and nurses who all care for his wellbeing and urge him forward in life.    

However, Hayden's best blessing these last three years has been his friends.  They all have been there for him unconditionally and treat him as he wants to be treated….just like a normal teenager.   These amazing kids appear at his side when we walk into an event and take charge. His oxygen tank is taken out of my hands and “Come on Hayden, we’re all over here” and off he goes to hang out with his buddies.  Every time this happens I have to hold back the tears of joy of how blessed he is to have these wonderful friends in his life.

On Graduation day, unbeknownst to me, I learned that Hayden had stubbornly talked his nurse and teachers into told his nurse and teachers that he was going to walk across the stage to get his diploma by himself and not only that, but he was going to walk down the isle at the end of graduation by himself.  Once again his friends and teachers where there to support him and make this happen for him.
                             Video of Hayden receiving his Diploma.
Walking from the stage with Eric Kielich, MTS teacher.

I feel like I am always saying this, but Hayden always is surprising me with his stubbornness, perseverance and determination which are his most inspiring qualities.   He continues to amaze me with how he chooses to live his life.

Congratulations Hayden on an amazing graduation….on your terms.  We are so very proud of you!