A recent study published in the journal Childhood Development, found siblings instinctually turn to one another for support during difficult circumstances.
When a child in the family is sick, it is felt deeply throughout the entire family. Daily routines are interrupted and the focus shifts to treatments and hospitalization. Just as the illness affects the child who’s been diagnosed, long hospital stays and periods of difficult flare ups and pain inevitably affect brothers and sisters, who quickly turn into an integral support system in the process.
Growing Up Sick
Thousands of children today are living with cancer and other chronic childhood diseases. Each year, 1,000 babies are born with sickle cell disease and wish-kid Amanda is one of those children. Now 16 years old, Amanda has lived with the symptoms of sickle cell disease since she was very young. She often spent long stretches of time in the hospital undergoing treatment.
“Growing up my parents made life with sickle cell as normal as possible,” Amanda said. “To be honest, I didn’t realize I was sick until I was five or six years old. I was in the park having the time of my life, jumping in and out of the sprinklers along with the other kids. But that day I tired easily and went home to take a nap. When I woke up, I was screaming in pain and that moment was when I remember everything began to unfold.”
Sickle cell disease is genetic blood disorder that causes the body’s healthy, round red blood cells to change into discs or donut shapes. Normally, the cells are flexible and move easily throughout small blood vessels, designed to deliver oxygen throughout a person’s body. But sickle cells are stiffer, sticky, and more fragile, causing them to clump together. This increases the chance of getting infections, having a stroke, and feeling weak or run down more easily. According to the Centers for Disease Control and Prevention, when sickle cells travel through small blood vessels, they can get stuck and clog blood flow, which is what can cause sudden pain. The pain can be mild to severe and last for any given length of time.
Amanda’s older sister Ashley, now 24, was away at college during some of Amanda’s more difficult years with treatment. Although Ashley is older by eight years, Amanda describes her sister as her best friend and support system.
“She’s my rock, I’m her rock,” Amanda said. “She’s very, very, very overprotective and that leads her to freak out if I’m not feeling well. Many nights she’d be crying and praying while away at college. If she finds out I’m having a crisis she’ll come to me wherever she is. I remember being in the hospital room and somehow she just intuitively knew I was not well. It could be 3 o’clock in the morning and she’ll have her friend drive her from her dorm room to the hospital and just walk right in and surprise me.”
The bond shared between sisters is scientifically proven to improve difficult situations. A study published in the Journal of Family Psychology, reveals having a sister protected adolescents, such as Amanda, from feeling lonely, unloved, guilty, self-conscious, or fearful. The statistical analysis holds up in all scenarios, despite whether the sister was younger or older or how far apart they were age wise.
“I’m very blessed to have my mom, dad, and sister living with me,” Amanda said. “When I have a crisis my sister keeps me from focusing on the pain, we watch movies, or listen to old music. It’s helpful when she keeps me distracted. But when I’m in pain, I have to be strong to her because it’s a chain reaction. If she starts crying, I’ll start crying and sometimes you’d think she was the one in pain too. But she’s always been right there with me. When she told me that I was going to be okay, I believed her.”
There is no one-size-fits-all treatment for sick cell disease—each patient responds to certain treatments differently depending on their symptoms. Pain is the most common complication for the disease, and for Amanda, it was one that made it difficult to function like other kids her age. Sickle cell pain can cause painful episodes called crisis, and Amanda experienced them every other week on average up until she reached middle school.
“Middle school was so hard,” Amanda, who is homeschooled, explained. “I wanted to be normal like the other kids and because my sickle cell crises were mostly triggered by stress, it became especially difficult. My mental and emotional states were not up to par and so my physical state was affected. I now understand my health was more important than being normal, but at the time the stress and pain led to depression and being suicidal. I was in pain almost every day for four years. So when Make-A-Wish came into my life, it was like a breath of fresh air.”
Amanda’s nurse came to her room one day to do her vitals and brought up the non-profit and how it worked. At first, she dismissed the idea because she couldn’t believe such a thing could happen at that difficult time in her life — she had lost hope. But her mother insisted she apply. Amanda was told she was eligible and met with the Make-A-Wish team who she described as people who felt like friends even though she had just met them. Within weeks she was on a plane to the Dominican Republic alongside her mom, dad, and sister.
But it wasn’t until a quiet moment on the trip that she felt the impact of the wish. Amanda was walking on the beach one morning and felt herself smile. She felt at peace. “I was happy on the outside, but the trip did more than that. It revived me internally.”