What is more terrifying and awful than having a sick child? Having both your children diagnosed with an incredibly rare disorder that can result in kidney failure by age ten. Two sisters, Emily and Poppy, have been diagnosed with cystinosis, an incurable genetic disorder that causes a build-up of the amino acid cystine within the cells of the body. Over time, the crystals form in the kidneys, eyes, liver, and the thyroid gland. It is very rare for people with crystinosis to survive into adulthood. The disorder only affects 1 person in 3.5 million.

Emily was born first and she seemed to be a happy, healthy baby. When she was about ten months old, Emily suddenly started vomiting frequently and losing a lot of weight. At first medics thought it was just a passing virus. But after three different hospital trips within five months medics started testing the girl for every possible condition from leukemia to cystic fibrosis. Emily’s mother, Jessica Kemp, was told that the rarer Emily’s condition was, the harder it will be to diagnose.

One in every 91 children in the United States was diagnosed with autism last year. This number does not even include Asperger’s, PDD, or other spectrum disorders. The number of cases has dramatically risen since the early 2000s when one out of every 250 children was diagnosed. This shows that the number of diagnosed children on the spectrum is rapidly growing. Because of this, a plethora of articles and campaigns have recently focused on allocating more public money towards education, health, and social services for those affected. But this effort is about to be in vain for many.

             I’ve read and heard from others that people suffering from eating disorders are usually ashamed to admit that they’re sick and that they have a problem. They try to keep it a secret and not let anyone in on the fact that they need help. My question is why? Why not open up to the people around you, the people that love you and only want the best for you?  

For years my cousin has suffered from an eating disorder, as well as depression. The two commonly go hand and hand, one usually triggering the other. Depression may trigger an eating disorder, or an eating disorder may trigger depression. All of the years my cousin suffered from this though, I never knew. I was never told any time she had checked herself in to a hospital, or attended any sort of outpatient program.  

One day, however, I received a phone call from my aunt, who wanted to meet me for lunch. Her tone of voice seemed off, add into the equation that she lives nearly 3 hours away, and doesn’t just call to meet up for lunch, and I knew something was wrong. I met my aunt the next day, and was told that my cousin, the girl that I spoke to every single day and whom I considered to be one of my very best friends, had gone out of state to a treatment facility to seek help for both her eating disorder and depression. To say I was blindsided by this news is an understatement. I honestly didn’t know what to feel, and my emotions were all over the place. I was shocked, sad, confused, worried, and even a bit angry, among others. I was shocked that this had been going on for so long without my knowledge, sad that my cousin was hurting, confused as to why my cousin didn’t feel as though she could come to me and tell me what she was going through, worried about her health, and pretty angry that I was kept in the dark for so long. I even felt kind of stupid, in the sense of “how could I have not realized any of this was going on?”.