Message from Marqus: Horseback riding

At my first lesson can't wait to see what horse I'm going to be on. I'm doing this for the sickle cell community. This is my lead and I hope the rest will follow. I'm at a point where I can say something about the connection between a sick person and a horse is amazing so follow me on this new journey I am on because I might be the first person with sickle cell to ride in the special Olympics world games. My trainer has a rider who will be carrying the Olympic torch in the world games next weekend. I hope to get there and shine so bright that everyone with sickle cell will feel it and be proud. I do this all for our community. Marqus

Sickle Cell Anemia Petition: 30-day readmission rule

Please sign this petition. Sickle Cell Anemia is unpredictable deadly and can't be subject to a 30 day readmission rule. Diseases that are incurable with very few treatment options leave patients vulnerable. Care for SCA has many hurdles the patient's suffer and can ultimately die
all why tying to justify that they are very ill. The often have to spend a great deal of time just having to prove they are ill. Please support our petition.http://petitions.moveon.org/sign/to-have-sickle-cell-disease.fb47?source=s.icn.fb&r_by=13054411

Please, sign this petition: 30-day readmission rule

PLEASE SIGN THE THIS PETITION TO WAIVE THE 30 DAY READMISSION RULE PERSONS WITH SCD CAN NOT PREDICT THIER CRISES!!!!
To Have Sickle Cell Disease Waived from 30-Day Readmission Rule
Petition by Bonnye Johnson FROM UIC PLEASE HELP

To be delivered to The Illinois State House, The Illinois State Senate, and Governor Bruce Rauner
"We the undersigned urge Illinois State Legislatures to support HR 0255 which urges the Department of Healthcare and Family Services to waive the 30-Day Readmission Rule for those with sickle cell disease.

There are currently 2,651 signatures. NEW goal - We need 3,000 signatures!
Petition Background
The 30-Day Readmission Rule states: Patients readmitted into a hospital/ medical institution within 30 days of discharge; the discharging hospital/ medical institution will be fined in the form of a reduction in reimbursement from the State for the patient's hospitalization. We DO NOT support the policy of penalizing hospitals who care for patients with sickle cell disease and the 30 day readmission penalty imposed on sickle cell disease. People suffering from this life long disease frequently have unplanned, unpredictable and recurring needs, such as controlling severe pain episodes that can only be managed in the hospital requiring multiple hospitalizations and readmissions in a 30 day period.
Current petition signers
http://petitions.moveon.org/sign/to-have-sickle-cell-disease.fb47?source=s.icn.fb&r_by=13054411

Message from Marqus: Grateful this holiday

I want to take this time to talk about the holidays. Last thanksgiving I was in the hospital and not at the dinner table for the the feast. But my family with the aid of Technology made it so I was. It got me thinking about how there will be folks in the hospital who might not have that. So thanksgiving comes around and we are with our family or friends about to eat pray for those who may be sick and hospitalized. Marqus

Photo: Birthdays

Thanks everyone for your support to bring back this smiling face !!!
I'm praying for his birthday it's 6 days
Away!!! My husband and Marqus have birthdays in the same week!! Those Red Robin free coupons are waiting for them LOL!!!
It's awesome how laughter has extra purpose it's a great way to cough and deep breathe!

Photos: Raising pups for service and animal assisted therapy work

We are raising these pups for service and animal assisted therapy work. An ADA service is like an extension of a persons health care. Marqus will use one of them for balance and mobility , to bring him his medicine bag and hopefully open the door for the paramedics. A true service dog performs specific tasks to aide the disabled handler. An animal assisted therapy dog may visit schools nursing homes provide comfort. The difference is the ADA dog is allowed in places where regular dogs may not go. They all are working dogs and will have hundreds of hours of training. Our dogs know when he is ill and they sense the onset of a crash. I've watched them follow him from space to space they will not leave his side . Last week they all tried to sit on his lap they knew he was headed into a crises. Dogs have a keen sense of smell. These guys have been trained not to touch his medical supplies. The one year old is still working on that. But they know if the condition of his wounds change or if a new type of dressing ointment etc is in place. They amaze me at hoe careful they can be with there great size.

Photo update: July 14, 2015

Finally some relief from pain just finished 2 more units of blood . Marqus is breathing a bit better. It's really great to see him sleep. I'm so grateful today for his hyperbaric wound devices and all the hard work the ICU nurses, RTs, doctors and everyone to relieve his suffering. Edward Hospital in Naperville takes excellent care of him. Thank you everyone for your prayers your like of this FB page His dream is to finish this documentary and it will happen.