Affecting about 100,000 people in the United States, sickle cell disease is a lifelong disease with many complications. It is caused when the red blood cells, which are round when healthy, are hard and sticky, and look like a C-shaped farm tool called a “sickle”. The sickle cells die early, causing a constant shortage of red blood cells. They also have a hard time traveling through small vessels and get stuck, often causing pain and other serious problems such as infection, acute chest syndrome, organ damage, and stroke.

enCourage Kids Foundation funds a monthly support group at Brookdale University Hospital & Medical Center for children and families living with sickle cell disease. Alexa Kreisberg, a Child Life Specialist at Brookdale Hospital explains, “In the support group environment, feelings of anger, depression, guilt, and anxiety can be expressed, validated by others, and accepted as a normal response to living with sickle cell or living with someone who has sickle cell…The biggest advantage of providing a support group is to help patients and their families realize that they are not alone and that there are other children who have the same chronic illness.”

Ashley, a 12-year-old girl with sickle cell, has been a member since the group’s inception. “I would just like to thank the program for not only the fun that I have had over the years but also the strength the program has given me, because living with sickle cell can be tough but having this program has been a bright spot in my life.”

The hope, joy, and support provided to pediatric patients and their families is palpable during every group session and carries on throughout their daily lives.

Meet our enCourage kid, Andrew: an avid basketball fan, soccer player, and all around active 16-year-old. From the outside looking in, you would think he is just like other boys his age, but Andrew has a rare disease called Hemophilia B. Affecting only 1 in 25,000 males in the United States, Hemophilia B is a bleeding disorder that reduces the ability for a person’s blood to clot, causing individuals with it to experience prolonged bleeding. Andrew is given the protein he is missing in order to create blood clots that attempt to keep his life as normal as possible. Unfortunately, this disease limits him from playing the sports he loves. If Andrew gets tackled or hit on the field, his body experiences episodes of internal bleeding in his joints and muscles, and he requires immediate medical attention.

Over the course of his life, Andrew has been to the hospital countless times. Each time, he keeps his hospital bracelet as a reminder of all he has overcome. When talking with Andrew’s mom, Milinda, she says, “He is my hero, I cannot express all the stuff that he has been through. I watch him pick himself up and keep going. He just has that spirit in him that he can do anything he wants to do.”

Last fall, Andrew accepted the incredible opportunity to be drafted onto the Rutgers University soccer team through a mentor program. With his strength and determination, Andrew continues to chase after his dreams and he does not let Hemophilia B get in his way. He says, “I just keep on fighting, I don’t stop fighting, I continue fighting. And nothing is going to stop me from reaching the goals I would like to have in life.”

For many children, music is an important part of the healing process. Therefore, it’s no surprise that music therapy is one of our most funded projects in hospitals around the country. As a powerful tool, music therapy is clinically proven to improve cognitive function, motor skills, emotional and affective development, behavior and social skills, and quality of life of pediatric patients.

Music therapy can take form in a variety of ways based on the needs of the child, and typically involves music therapists working either with one patient at a time or in group sessions. The treatment can often include a patient listening to or moving to music. In these instances, music therapists play instruments and sing at patients’ bedsides as well as create recordings that can be played for children in isolation and babies in the Neonatal Intensive Care Unit. As a creative outlet that provides distraction and gives children a means of communicating their emotions, music therapy also enables pediatric patients to create music with instruments or sing to music.

enCourage Kids has proudly funded the music therapy program at Blythedale Children’s Hospital since 2013, making it an integral part of their Child Life Program. For patients in their Traumatic Brain Injury Unit, one of the largest populations served by this grant, therapy sessions are highly effective. They induce relaxation, provide sensory stimulation, decrease pain, promote self-expression, and increase a sense of control and empowerment. Additionally, music therapy has proven its ability to decrease stress hormones, stabilize heart rates, and stimulate brain activity and recovery, even when patients are in vegetative or minimally conscious states.

Music therapy is an important part of the hospital experience and is vital to promoting health and reaching social, emotional, physical, and cognitive goals of pediatric patients.