The nonprofit HYPELITE wants to inspire and empower students to take charge of their future by cultivating their passion and creativity.
Aidan’s dad, Ciarian, talks through his family's experience from diagnoses to their trip to Barretstown:
It was 2014. Aidan was four years old. For months he had been getting sore legs — so much so that it would wake him at night. My wife Leonie and I took him to our GP, who suspected it was down to growing pains. We didn’t think too much of it, as Aidan didn’t have any other issues. The soreness would come and go.
Then one morning, Aidan couldn’t walk downstairs. He had to bum-shuffle down. That’s when my wife and I knew something was wrong. We took him to the GP, and were sent off to Crumlin for a blood test. Straightaway we got the diagnosis. Our little boy had cancer. Acute lymphoblastic leukemia. Our world broke to pieces. Aidan started treatment. It was all a blur for me and Leonie. We didn’t want to believe it. How could our little boy have cancer?
Aidan was in and out of hospital for treatment. Early on in his treatment, he got sepsis, a blood infection. He spent a month in hospital. Leonie and I felt like we were living on a knife’s edge.
We thought we might lose Aidan.
Thankfully we didn’t. But Aidan wasn’t the same little boy who went into hospital. After his sepsis cleared, he picked up a fungal infection. He had biopsies so doctors could find out what was going on. Even his Freddie line got infected and had to be removed. That meant he got poked over and over for his antibiotics, antiviral and antifungal medicine to be dripped into him via IV, nearly 24 hours a day for weeks on end. Every day I had to watch my son being forced to do things that caused him pain. As his dad, it was my job to protect him, and to take his pain away. But I couldn’t do anything.
Between November and December, Aidan had spent four weeks in hospital, including a weekend in ICU. I know during that whole time he didn’t feel anything like a regular child anymore. I remember sitting at his bedside in hospital. He looked so tiny lying there. All he wanted was to be healthy, and to be back in his own bed. Leonie and I put his Star Wars sheets on his bed to help him feel a little more at home.
How do you explain to your four year old son why he was being put through so much?
We told Aidan he had baddy blood cells and he needed to take his meds to fight these bad blood cells. That’s how we explained it. He didn’t ask us anything more. He just trusted us to look after him. I saw Aidan go from a happy little boy, and loving big brother to our little girl Maya, to someone who had become quiet and withdrawn. He was more than withdrawn. I felt Aidan was depressed. It was unnatural to see in a four-year-old. Aidan stopped talking. He stopped smiling. He would communicate with us by shakes or nods of his head. He was going into himself.
It was two weeks to Christmas. We didn’t know if Aidan would be well enough for us to bring him home for Christmas. He got out of ICU, and was through the worst of it. He was still very sick though. But thankfully, we were able to bring Aidan home on Christmas Eve. After weeks of not seeing her big brother, Maya had Aidan home again. But he couldn’t play and run around with her the way he did before he got sick. It was such a shock for Maya, who was only three, to see her big brother so sick. He was bloated and weak. And he had lost all of his hair.
Our social worker in Crumlin told us about Barretstown. So after Christmas, when Aidan was coming through the worst of his treatment, Barretstown offered us a place in one of their camps.
It came at just the right time for us. It was the spring of 2015. The spring I got my son back.
Unless you’ve been there yourself, it’s hard to explain what it’s like being in Barretstown. For my whole family, it was like entering a magical world. A world that was all about children having fun. Watching their parents being silly and falling over each other. And dancing for our food at dinner time. It did Aidan and Maya a world of good. She badly needed Barretstown too.
You see, for months, my wife and I were swapping in and out of hospital, taking turns staying with Aidan. Maya was at home. She didn’t know who would be putting her to bed at night, or who would be there in the morning when she woke up. So having that weekend in Barretstown, seeing Aidan and Maya laughing and having fun together meant more to me than you could imagine. In camp, Aidan got to meet other children who had cancer. He saw them taking their tablets. They showed each other their Freddie’s and talked about their injections.
Like Aidan, a lot of campers had lost their hair. I think seeing other children who looked like him made him feel less different. I think in Barretstown, he started to feel like a normal child. Aidan started to smile again. Cancer took Aidan to a dark place. But Barretstown pulled him back out into the light again. It’s a strange thing to say, but it’s as if Barretstown gave Aidan permission to be a child again. To just run around and be silly. It showed him that being a child was about more than being stuck in a hospital bed, and getting poked and prodded.
Aidan made friends in Barretstown. He got to do things he never thought he’d be able to do because of cancer, like ride a horse, do archery, and paddle in a canoe. Doctors are making Aidan better, he’s still in treatment, and he still has tough days. But he’s our Aidan again. Smiling, happy, full of beans. And Maya has her doting big brother back.
Even though we had to leave Barretstown, the happy memories Aidan made in camp haven’t left him. It’s like cancer had snuck in and turned off the light. But Barretstown came and turned the light back on — not just for Aidan, but for all of us.
A version of this article was originally published on Barretstown.org on November 14, 2017, and has been reproduced with permission by Barretstown.
Barretstown offers free, specially designed camps and programs for children and their families living with a serious illness — supported behind the scenes by 24 hour on site medical and nursing care.Learn More
Opportunities Academy is a post-secondary school that caters to and empowers students with intellectual and developmental disabilities.
Since its inception, the Deaf Enabled Foundation has tried to bridge the gap between the deaf and hearing enabled.
From working with autistic children to adapting equipment for paraplegics, DSES believes that no one should be left behind because of a disability.
The goal of Backpacks for the Street and Together Helping Others is to offer hope and compassion to the city’s (oft-ignored) homeless population.
In India, marginalized children have to fight many battles. One married couple wanted to give these children a fighting chance through music.
In 1964, Headmaster George Stevens had the bold idea to make good use of the summer months and open an empty campus to under-resourced students.
This San Francisco-based nonprofit's mission is to empower their community to buy, cook, and eat good food every day.