Open Letter to Rickey Smiley: ……..and anyone else who thinks dying from Sickle Cell is a Joke.

Dear Rickey Smiley,

My son Dylan was diagnosed with Sickle Cell Anemia at 5 weeks old. Sickle Cell Anemia is an incurable blood disorder that causes pain when sickle shaped red blood cells are trapped in blood vessels. I remember our first doctors appointment where the hematologist taught me how to check my newborns spleen to see if it was enlarged and how to assess whether my 5 week old had suffered a stroke.Both enlarged spleens and strokes are common in patients with Sickle Cell Anemia.

I also remember at 5 months Dylan was hospitalized with a fever. By the time we left the hospital his hands were so swollen and in pain he refused to let anyone touch them or hold his bottle. His sickled red bloodcells were trapped in the tiny blood vessels in his 5 month old hands.

Over his short 5 year old lifespan he’s been in the hospital numerous times some times for weeks at a time. One of the most devastating stays was a painful crisis that rendered him unable to walk when he was 2 yrs old. During this stay he cried out in excruciating pain while I tried to hold it together and decide whether morphine was the best choice for my 2 yr olds 20 pound body.

Did you find any humor in the 3 experiences I just mentioned? Was there any thing funny about witnessing a baby in pain? While reading did you think this is great comedic material? Dylan hasn’t even experienced half of what some other Sickle Cell Warriors have experienced at his age. Some have already had multiple blood transfusions, spleen removal, strokes and other Sickle Cell related complications before the age of 5. Life expectancy for women with Sickle Cell Anemia is 48 and for men with Sickle Cell is 42 yrs old. http://scinfo.org/2018/01/11/sickle-cell-news-for-january-2018/

It was extremely irresponsible for you to list Sickle Cell in the list of fake ailments in your church obituary skit. Your platform is huge and includes many Sickle Cell Warriors? their friends family and loved ones. None of them found this to be funny. In fact if you read the numerous comments on your page and on YouTube you will see how hurtful this joke was to your fans. It was unnecessary for you to include Sickle Cell Anemia in your skit. Its hurtful that this life threatening and life shortening disease is not even taken seriously in our own community.

In December 2018 the government finally decided to take Sickle Cell Disease seriously by approving the law that will increase funding, research and treatment options for the Sickle Cell community

https://www.nbcnews.com/news/nbcblk/bipartisan-bill-aimed-fight-sickle-cell-disease-signed-law-trump-n949691 (

Sickle Cell Anemia primarily affects the black community , your target audience. You will never find a comedian joking about Tay-Sachs or Cystic Fibrosis which are rare diseases that affect a very specific population. These diseases affect less people in the US yet they receive more funding and resources than Sickle Cell Anemia.

Everything is not meant to be a joke or taken lightly. Please consider using your platform to provide more awareness around Sickle Cell Anemia so that others will take our warriors seriously as well. Often are warriors are treated poorly by the medical community who assume they are drug addicts when they come in complaining of pain. Sickle Cell Warriors need the support of their community without being the butt of a poorly thought out joke.

Update – The YouTube video of the segment has been removed thankfully.


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.

mom and dylan fly

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!!!

 

 

 


Today We Celebrate 10 Months Since Warrior Dylan’s Last Hospital Stay

It’s a celebration!!! Today marks 10 mos since Dylan has been hospital free! We celebrate every month bc we are sooooo grateful! We are not about that hospital life.

Someone asked recently. How is it that Dylan hasn’t had pain in almost 3yrs (Jan 2019 makes 3yrs) but has been in the hospital during that time. Why is he going to the hospital?

Sickle Cell patients are prone to picking up bacterial infections and viruses easily. Their immune system can be compromised by a poorly functioning spleen which many times must be removed very early on. Protocol is that if a SC patient has a fever of 100.4 they must go to the hospital. Usually they have to stay for at least 48hrs to see if the bacteria grows in the culture they take upon arrival. Fever must be gone for at least 24hrs.

Dylan’s last hospital stay we were there for 36hrs for a fever. He was doing so well they let us go early. We are so grateful that our natural regimen is working.

Dylan (at 8mos) below with his great aunt Demetria. Today is her birthday. 🎉🎉