Imagine being worried because your giggling 6 month old son won’t eat, is constipated, and drastically losing weight.
The doctors tell you he has a rare disease that affects all of the cells in his body.
Then you find out only 8 other children in the country have it, too.
This was the reality for Donna Nolan, whose son, Hagan, was diagnosed with cystinosis.
In an interview with Ireland: AM, Donna recalls the harrowing journey her family has gone through. From a happy, giggling baby to a 6 month old who became constipated, threw up his milk yet craved water, and lost weight.
In her gut, Donna knew something was wrong. But with the blood work coming back normal and Hagan being his happy, giggly self most of the time, she started to doubt herself. Maybe she was just being a crazy, anxious mother.
But then she heard the words fro her public health nurse that changed everything: If something in your gut says it’s wrong, then it’s wrong.
Hagan lost a drastic amount of weight and they were finally admitted to a hospital. Donna vowed not to leave without answers, but cystinosis was not the answer she expected. It was explained to her as a disease that caused crystals to form in all of his cells and destroy them.
“My baby is so innocent. What did he do to deserve this?”
Shock. Disbelief. Anger. Why?
It took Donna and her husband two months to wrap their heads around not only the cystinosis diagnosis, but all of the changes it made to their plan. Hagan needs medication multiple times a day at very specific times, and he takes all of his medicines and food through a feeding tube in his stomach. Even though Donna and her husband are emotionally and physically exhausted, they will never give up.
“We’ll do anything for our son.”
Donna implores people to donate to Cystinosis Ireland, a charity dedicated to raising money to find a cure for cystinosis. Imagining Hagan’s future, Donna get’s emotional.
“I can’t let this happen to him. That’s why we need to find a cure.”
If you are a parent of a child with a rare condition, you can relate greatly to the Nolan’s situation. Share this article to not only raise awareness for cystinosis, but to help the public know how important it is to help children with rare diseases everywhere.
