Photography by Danielle MacInnes Photography
Meet Aidan. He is Beauty Revived.
No parent should be told their child will die by the time they turn 15.
When my husband and I were told that our son had Hunter Syndrome our world as we knew it ended and we plunged into darkness.
I was in my third year of internal medicine residency, happily married to my husband Tripp and pregnant with our first child. I did everything right – took prenatal vitamins, ate healthy and exercised. I went to all the appointments and had the recommended prenatal screenings. We were filled with so much love for our baby boy who arrived on July 26, 2008.
Aidan was a joy from day one. Each milestone was celebrated, each first recorded. Like all parents, we enthusiastically anticipated more milestones and a bright future for our beautiful boy. But Aidan’s first year had some hiccups…
At 3 months old he had inguinal hernia surgery on both sides, recurrent ear infections (requiring several sets of ear tubes),delayed crawling and a flat head requiring a helmet for reshaping. He also had severe asthma, resulting in several hospitalizations.
At Aidan’s 15 month check up, his head circumference measured in the 120th percentile. Our pediatrician examined him carefully before consulting her senior colleague. Together, both physicians studied our son- and then, everything changed.
They suspected Aidan had Hunter Syndrome (the umbrella term is Mucopolysaccharidoses) and needed to see a geneticist. Hunter Syndrome is an X-linked disorder. Only boys are affected and since only 1500 cases exist worldwide, it’s classified as a rare disease. Boys with Hunter Syndrome lack an enzyme called Iduronate 2 Sulfatase (I2S) which is critical to the function of all cells in the body. It clears waste products produced by cell metabolism and when it’s not present, waste products accumulate, gradually causing progressive organ failure.
Boys with Hunter Syndrome appear typical at birth. Over time they begin to develop large heads, large tongues, recurrent ear and breathing infections, tracheal weakness, heart valve abnormalities, stiff joints, hearing loss, large livers and spleens, bone disease, eye disease and nerve pain. In about three-quarters of the cases, they suffer from progressive cognitive decline and their IQ can regress to that of a one year old.
There is no cure. However, there is a synthetic form of the enzyme called Elaprase that helps alleviate some aspects of the disease. Elaprase helps normalize liver and spleen volume, ease joint stiffness, and improve respiratory function – but it does not prevent the other life threatening issues.
Hunter Syndrome is a slow and painful death sentence that strips your child of the milestones once celebrated.
Aidan has been subjected to a myriad of tests. He had a brain that looked abnormal on the MRI, a liver and spleen the size of an adult’s, hearing loss requiring hearing aid, and bones that were misshapen and misaligned. Each x-ray, ultrasound and MRI brought more horror of what laid underneath his infectious smile.
Those were some of the darkest days of my life. We were told that our first born would die in his second decade of life. Parents of boys with Hunter Syndrome don’t know if their son will have the cognitive decline that is experienced in 75% of kids until they turn five. Can you imagine spending the first five years of your child’s life watching for signs of cognitive regression and worrying if your son would literally lose his mind? Whenever Aidan forgot or stumbled over a word, my mind would immediately take a tailspin to the darkside.
Today Aidan is a social, animated and lively 8 year old who adores his younger brother and sister. He’s changed the way I parent and has taught me what matters most. His pure zest for life has carried us through this journey. We use humor and a “no big deal” mentality and our days are measured by laughter, smiles, and courage. Success is no longer defined by a test score or becoming a star athlete. Rather, it’s Aidan having the strength in his hand to complete an assignment or being able to lift his arms above his head to throw a ball. Success is simply attempting a task.
Because of Aidan, I carry a much stronger gratitude for what I have today. I do not parent for the future, I parent for today. No parent should be told their child will die by the age of 15. Researchers believe they’re on the brink of finding a cure but without funding they can’t move forward. None of us can.
Aidan has inspired: Action for Aidan, which has raised $280,000 for gene therapy research at the Nationwide Children’s Hospital in Ohio. We won’t stop until there is a cure and will continue to take Action for Aidan.
To learn more, visit actionforaidan.org.
About the Photographer
Danielle MacInnes is a New Hampshire Seacoast based photographer who believes every family has a story to tell. Fueled by her love of photography and her passion to tell stories through imagery, Danielle approaches each session with the creative mindset of a family historian. Her other job consists of parenting three wicked cool kids who constantly try to elude her lens.
You can see more of her work here: www.daniellemacinnes.com