Sickle Cell Warriors

Articles

 Breaking News
  • VOICE Crisis Alert App VOICE Crisis Alert App The VOICE Crisis Alert app is the first national app created for patients and families with sickle cell disease. The app stores all its data locally...
  • World Sickle Cell Day 2018 Hello Warrior Family! Don’t forget, today, Tuesday June 19th is World Sickle Cell Day. This was specially designated by the World Health Organization in 2009 to improve the education, research, and...
  • SCD Adult Support Groups in Southern California California Warriors, great news! Cayenne Wellness is now hosting monthly support group meetings in Fresno, San Diego, Los Angles, Loma Linda, and Antelope Valley. You get to meet others with...
  • Tracing sickle cell back to one child, 7,300 years ago Tracing sickle cell back to one child, 7,300 years ago Check out this amazing article by Nalina Eggert of BBC News for a journey of SCD from 7,300 years ago.  The...
  • Meet Brittany: Caregiver, poet, and writer This week’s warrior in the spotlight is Brittany Hightower.  Brittany is a caregiver who is beautiful, intelligent, and passionate about poetry. And oh yeah, she has sickle cell. How old...

Meet Kai: Fly, 5 and Alive!!!

This week’s warrior in the spotlight is so much younger than everyone else…but oh so adorable that we just had to feature him! Kai is 5 years old, and his mother Angel sent in his remarkable story.

Hello Angel!!! How old where you when you found out you had sickle cell trait? I was young, maybe 15 I think when I was told I had SC trait. My son Kai was diagnosed when he was 1 month old. I live in Florida and they do at-birth screening.

How is Kai dealing with school and sickle cell? School has already been real tough for him. They him to redo pre-school. I opted against it because I felt he didn’t need to start school already behind his peers. I quit my job when he started Kindergarten and volunteered as a classroom mom so I could keep an eye on him. We’re very fortunate to have a school that allows me to play such a hands on roll. I was allowed to sit with him during class. That way when he was in the hospital I was able to keep him up with the rest of the class because I was aware of the teachers, assignments and teaching methods.

He is so lucky to have you as his rock. Have you noticed sickle cell limiting Kai in any way? He has an older brother who doesn’t have the disease who is very active in sports. Unfortantely Kai cannot play sports due to the severity of his SCD.

I’m so sorry to hear that Angel. I too was held back from sports and it hurt my heart to see my sisters competing athletically while I was on the bench. What helps Kai get through a crisis? Music helps him. I’ve always brought soothing music whenever he’s had a crisis. I think it’s really helped him. One in particular he requests is the Hawaiian version of “Somewhere over the rainbow

That is such a great song. Does Kai have regular pain (more than 2x a week)?  He does– he is in constant pain. It’s usually either in his back or hips. It has caused him to rely on a wheelchair on really bad days.

What is his daily medication regimen and what medications does he take when in pain? They are thinking about trying him on Hydroxyurea again. Daily he takes Folic acid, Tylenol, Motrin, Lortab.

I know readers will want to know if you have considered looking into the bone marrow transplant for Kai? His brother might be a match and he’s young enough that he could do well with the procedure and be sickle cell free. Just a thought…I wish you and Kai well and the very best that life has to offer. Blessings.

About Author

Sickle Cell Warrior

Sickle Cell Warrior

Tosin is dedicated to perpetuating healthy and positive messages about sickle cell. Although sickle cell is a subject often taboo in the communities this condition is most prevalent, Tosin's message is that sickle cell is not something to be ashamed of and you can live a rich and fulfilling life with sickle cell. Sickle cell warriors are the most amazing people in the world, with a great fortitude for compassion, willpower and strength.

Related Articles

0 Comments

No Comments Yet!

There are no comments at the moment, do you want to add one?

Write a comment

Write a Comment

This site uses Akismet to reduce spam. Learn how your comment data is processed.

Donate

Support awareness & education for SCD

WordPress › Error

Error! Donation amount must be a numeric value.