Welcome Back to the Blog

Hello and thank you in advance for allowing me to share with you.
I can't believe the last blog was in 2013. Time flies by like the speed of light .

We have a lot to share Sickle Cell has a new momentum and hopefully our story
is an inspiration for everyone to push ahead for new research, new drugs unique to us , new legislation, inclusion in policies, push the envelope for a cure and recognition for our strength
often in the face of adversity. We will move forward from "oh yeah I think I had a cousin with that"
to knowing our status ,understanding genetics , speaking with the authority this life threatening disease commands.

February 2016 will mark 2 years since our participation in the FDA public hearing for persons with sickle cell disease. The experience was life changing. Until that moment in time we had not been
in the same space with thousands of stakeholders for sickle cell disease. The hearing was not only live in Silver Springs MD but comments were taken by computer and  by phone  from across the USA.

There is strength in numbers but in addition to numbers there is power in knowledge .
I urge all persons , friends , family , stakeholders anyone who cares about someone with Sickle Cell Anemia to understand the science.
Learn the terminology, the condition and potential complications know where to find answers and
if anything is remiss keep questioning .

Over five years ago Marqus had a dream to make a film a documentary about Sickle Cell
not because he was seeking 5 minutes of fame but rather he felt there was a need for the story to be told.

Marqus is now 32 years old and in the years from dream to reality many changes have occurred many
challenges have crossed our path.

As we fill the pages and the screen with our life even the messy painful terrifying stuff
plus the joys , triumphs and accomplishments please follow , join us on the renewed journey.

We will continue to share as well as honor those that are not here to see the films completion.
Life comes with no guarantee no specific road map, no matter how hard we try to make one as humans.

We  plan , save , have lists , goals , spread sheets, insurance , retirement , education, work, vacation, build relationships , lose relationships  and so much in between . Despite our best efforts still no guarantee and what better teacher than  a person whose mortality is in question.

Early on we had to brace for the question will Marqus grow up ? Then we realized that we can't truly live in that dark place. Instead we chose to be grateful for each sunrise push forward and embrace
things that may seem trivial to some.

Please don't get me wrong having a disease that wages a war on each and every part of the body
is hell. As a mother and a RN of 38 years I would be lying if I didn't tell you how my heart brakes with each damaged body part and with each complication .

BUT none of us will succumb to any form of despair. Marqus from day one had to be tough
and we have to be tough with him and for each other.

Right now in real time the thought crosses my mind will the documentary be finished
while we have another sunrise. I fight this thought by stepping out on faith and working to lessen  complications  that can be controlled. We know that as we watch him walk, ride a horse in therapy , go to dog training class for his service dogs to be, work with his sister and brother and others on the film, smile, laugh and have consideration for others despite non healing painful wounds on both ankles with his Oxygen strapped to his back that we have to stay tough , stay the course we can not and will not buckle. He fights for his life and we are  with him. There are so many Warriors just like Marqus. Since the inception of the dream and all the changes along the way Marqus has endured  many insults to his body. We are in recovery mode again and are working to renew our spirits .

Stick with us ,follow us ,we thank you so much. There is more to come and much more work to do.

 Luv Mama Fran