Inspirational Stories, Sickle Cell Disease

St. Jude and Sickle Cell – Changing Lives

Life changing moments don’t happen everyday. 2 weeks before my trip to St. Jude Children’s Research Hospital I was contacted by an orphanage in Uganda. The orphanage houses children whose parents abandoned them because they were born with Sickle Cell Anemia. I was told, “at least every week, you may find 2 or 3 thrown at the road side.” Of course, the conversation bothered me. Here I am, a mom of a daughter born with Sickle Cell Anemia (SS) and I can’t visualize life without my child. She was born with a purpose and has added so much meaning to my own life. I can’t imagine abandoning her or feeling like her life was a mistake. Caring for a sick child can be tough on parents and families but organizations like St. Jude can help.   

St. Jude Blood Donor Center: if you cannot give green, give red. Blood and plasma are neededSt. Jude is a unique hospital. It is one of the top hospitals in the US for children’s cancer and other rare diseases like Sickle Cell. The hospital helps give parents reassurance about their child’s diagnosis. In fact, the first research grant the hospital ever received (even before the doors opened) was for sickle cell.

It has one of the largest Sickle Cell Disease programs in the country with more than 800 patients. St. Jude was also the first institution to cure Sickle Cell Disease with a bone marrow transplant in the 1980s. It is the only pediatric cancer center to be designated as a Comprehensive Cancer Center by the National Cancer Institute.

Not Your Average Hospital

As I walked the grounds I felt a steady rhythm of happiness. We met a mother whose son, had cancer. Instead of talking about fear or pity, she spoke of faith and advocacy. She talked about praying after her son was diagnosed, “Lord, guide me and don’t let me be blind-sided.” She also spoke about how St. Jude has listened to her concerns and how they established a parent counsel to help parent’s feel directly connected with the treatment for their children. She spoke of sibling activities that the hospital provides so siblings of children who are diagnosed don’t feel left out. She even told us that there is valet parking on treatment days. Her words helped change my outlook about my own situation. I can’t change the past; instead, I have to paint my future anew one day at a time. I have visited many hospitals in my life and I have never seen so much love and compassion for people towards others. The walls are bright and colorful. Everyone appears to be full of smiles and joyous. The staff members speak about the patients intimately as friends and family. The amiable environment was welcoming and pleasant. The hospital doesn’t only treat the patients and send them on their way. Instead, they educate the parents and patients, mentor, house, entertain, and feed them as well. 

St. Jude Target House for long term housingThe services provided are absolutely fantastic. Some of my favorite are:

  • The fresh vegetable garden where Chef Miles McMath prepares nutritionally rich food for the patients.
  • Target house provides long-term patients a fully furnished apartment to live in while receiving treatment.
  • The Memphis Grizzlies House provides short-term housing (from 1-7 days) for families of children treated at the hospital.
  • There is also a program that combines Yoga and nutrition to help promote wellness in the patients’ lives for years to come.

What’s also amazing about St. Jude is that the parents never receive a bill. When I heard that I was completely in awe because I know firsthand how expensive care for a child with a disease can be, even if it’s just for regular check ups. To provide another level of exceptional service, the Family Advisory Council was established to ensure the patients receive family centered-care. These parents are involved “in a variety of projects that impact the daily operations of St. Jude.” I wish other hospitals would adopt the overall model of care that St. Jude provides because it’s refreshing.

Listening to the patients and parents tell their stories had the greatest affect on me. We heard from a 13 year old sickle cell patient and her mother. While, pregnant the mom found out from having an amniocentesis test that her daughter would have sickle cell. The mom knew that the diagnosis could eventually be fatal so she vigilantly begin devicing a plan to keep her baby healthy and her daughter became a St. Jude patient while still in utero. Now, in high school she had a smile so bright even the sun would be envious. Her mother spoke of joy and a healthy life for her daughter.   No child should die in the dawn of life. Quote, found on the wall at the St. Jude PavilionWe also heard from a mother whose adoptive daughter was living in remission from having Wilms tumor. She told us,  “St. Jude isn’t just a hospital, it became a part of my life.” The mom now mentors other mothers who are dealing with the same things she once experienced, creating an outstanding source of empathy and connection among the families at St. Jude. Both mother’s left me with the following impression: although our children are faced with huge life challenges at a young age, we are well blessed to live in a country where treatment is not only available but where families can connect and support each other. We can help bear each other burdens, and grant each other hope. With an hospital like St. Jude available, parents of children with Sickle Cell Disease and other illnesses have hope, because through research and a commitment to their patients the hospital continues to help change their patients’ quality of life. My family is extremely blessed that my daughter is fairly healthy, which gives me an opportunity to educate others about the disease. Overall, visiting St. Jude has helped me bury my worry about my daughter’s future so I can focus on her dreams.

About the Founder

Actor and comedian Danny Thomas  is the founder of St. Jude, he had an extraordinary vision to dedicate his life’s work to help families in need with their ill children. He’s commitment and belief in social justice for all people regardless of race, religion, or economic status was epic and continues to be revolutionary. The work of St. Jude is internationally recognized. The hospital employs some of the best and brightest in their fields. Although it is a hospital where sickness abounds, I’m sure it is one of the most hopeful places on earth.

St Jude Children's Research Hospital is Internationally recognized

Can you Change the World?

If you ever wanted to change world supporting to St. Jude is a great start. Your donations can help to grant someone a whole new outlook on life as well as change their world for the better. “St. Jude is working to drive the overall survival rate for childhood cancer to 90 percent in the next decade.” If you ever have an opportunity to visit St. Jude Children’s Research Hospital do so. Seeing families who know how fragile life is, teaches you how to live your own life more abundantly and value the importance of the little things.

 

Support the St. Jude Sickle Cell Disease program

Donate to St. Jude online: Ways to Help

Donate to St. Jude phone: 800-805-5856

Donate to St. Jude by mail: Printable forms

Questions and concerns: donors@stjude.org 

Donate to St. Jude Children's Research Hospital

Learn more about St. Jude from other bloggers who attended the St. Jude tour:

* This is NOT a  sponsored post. Featured Image Credit: St. Jude Child’s Research Hospital by Peter Barta
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