Sickle Cell Warrior Dylan Celebrates his 5th Birthday and 1 yr with NO Hospital Stays!!!

As I type this Dylan is sleeping in his room with his younger brother.  I think about how many times they’ve been separated because of Dylan’s countless hospital stays.  In fact when I was in labor with his younger brother Dylan was admitted into the hospital.  I gave birth on one floor of the hospital while Dylan was a patient two floors below.  Two months later he was admitted again.

For a moment I believed this was going to be our life forever and that his Sickle Cell diagnosis would keep us bound to a hospital room every couple of months. Most of his hospital stays were due to elevated fever and viral infections.  Some bacterial infections as well including Pneumonia and Strep. His first pain crisis devastated me. My active toddler could not walk due to the pain in his feet. Unlike his other hospital stays Dylan cried for hours and could not sleep during the night. Motrin and Tylenol were not able to successfully eliminate his pain.  This is when they offered my 2yr old morphine. I could not conceptualize giving his tiny 20lb body such a strong drug. Plus if we start morphine at 2yrs old where do we do from here? If he has pain as an adult morphine will be useless if he starts at 2.  I agreed to Tylenol with Codeine and thankfully it worked.

If you’ve ever spent any time in a hospital you know that this isn’t an ideal place for healing.  The nurses will tell you they found me sleeping in Dylan’s crib most nights and wondered how I managed to fit and sleep in a hospital baby crib. I could never leave Dylan alone in the hospital. My sweet little hairy baby.  As he got older I would leave for a few minutes to grab coffee before he woke up.  Once, while we were admitted, a warrior was receiving a blood transfusion and his mom left him alone for hours and he yanked out the tubes and blood was all over his room.

 

2nd Hospital stay June 2014

After countless hours of research, I finally found the right mix of vitamins, minerals and herbs. We also completely cut milk and almost all other dairy products from Dylan’s diet. We also limit meat consumption.  I’m truly grateful that for 1 full year we have not had to spend one night in the hospital or one second in the ER.  Dylan has also been pain free for almost 3yrs.

In the last few weeks we have added EvenFlo to the mix.  Only because his hemoglobin has remained 7-8 and hasn’t budged despite his vitamin regimen.  I’m hoping for a nice increase in his hemoglobin in the next few months.  I’ll report back when we have the results.

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Now for the celebration!!!!

In the last year Dylan has lived a very full life! He spent a full year in Pre K with no sickle cell related absences, pain, or hospital stays.  He has been to the pool and beach multiple times.  We even went indoor skydiving with his older brother.  Dylan rode his scooter over 2 miles in Prospect Park without even blinking an eye or taking a break.  In fact he had to come back to get me a few times because I was moving too slow.

We pray that with proper hydration, diet and supplemental vitamin and herbal nutrition Dylan will continue to live a full pain free life.

Happy 5th Birthday Dylan!!!

 

 

 


The Memory of a Sickle Cell Warrior Princess and Beauty Queen Lives On Through Shak’s Hope

September is Sickle Cell awareness month and all over Facebook Sickle Cell Warriors and their families have changed their profile pictures to add awareness frames.  Warriors are sharing facts about Sickle Cell Anemia and discussions surrounding this “rare disease” are happening more and more frequently.  As we share facts about the disease itself we are also sharing our personal experiences with this life threatening and debilitating disease.

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Sickle cell anemia an inherited form of anemia — a condition in which there aren’t enough healthy red blood cells to carry adequate oxygen throughout your body. ( 1 )

Sickle cell disease is a group of inherited red blood cell disorders.  In the United States, most people who have sickle cell disease are of African ancestry, but the condition is also common in people with a Hispanic background. Because the disease runs in families, couples planning to have children can have genetic testing. ( 2 )

Warriors diagnosed with Sickle Cell disease may experience frequent pain, organ damage/failure, strokes, pneumonia and a host of other debilitating outcomes as a result of the disease.

It is difficult for some to understand exactly what Sickle Cell Warriors experience because many warriors keep their struggles a secret. They suffer and don’t share gruesome details of the pain they are experiencing.  When speaking with Andrea Hall about her daughter, Shakira Martin, we talked specifically about the “shame” some warriors feel and where it stems from. Andrea shared with me that Shakira did not want anyone to pity her.  She wanted to be like everyone else. She requested her port be placed out of sight so that attention would not be drawn to it.

According to her mom Shakira always had a special zest for life growing up and it continued into adulthood. “Her determination to live a happy fulfilling life transcended all pain.  She made it her life mission to not suffer in silence and wanted her fellow sicklers to do the same” Shakira traveled the world and enjoyed playing mas during Carnival.  She was the life of the party and I can vividly imagine her breaking out of the hospital to go see Beyonce on tour.

One of her biggest accomplishments was embarking on a year long journey to become Miss Jamaica Universe 2011. She was healthy the entire year during the competition and she won!

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Shak Dolphins

Shakira had the idea of starting a foundation to help raise funds for other warriors to encourage them to “Live no matter what!” She knew all too well what it meant to be in pain and stuck in a hospital room.  Thus, Shak’s Hope was born. Shakira lost her battle in Aug 2016 and her mom Andrea leads the foundation in her honor.

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Shak’s Hope provides services, awareness and quality to those affected by Sickle Cell Anemia in South Florida and the Caribbean.   Please consider donating, volunteering or sharing their services with Sickle Cell Warriors who may benefit from the support.

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