How Change From Coffee Leads to Change in Lives

Late in the evening, a car-hailing service picked us up, and with a hurried but firm voice, we told the driver to go quickly to the emergency room. We crossed the island streets to the large children’s hospital at its center.

The roads were soaked as rain continued to fall. Streaks of streetlights and raindrops sliding down the window blurred my vision even more. Between nervous glances at my daughter, I stared intensely out the windshield. I silently willed the driver to go faster and prayed for the lights to turn green.

The only thought was to get to the hospital as quickly as possible.

We left the house in a hurry, only thinking about how to get our daughter, Rylae-Ann, to the hospital as fast as possible. I worked my thumbs on the app while my wife tried her best to calm Rylae-Ann out of her spell-like trance, which we later learned was called oculogyric crisis.

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After our daughter was sedated for what was misdiagnosed as epileptic seizures, we learned she would be required to spend several nights in the intensive care unit (ICU) for tests and observations. Up to this point, we hadn’t considered where we would sleep or how we would eat.

A home in the ICU

There was no way we were leaving that hospital, but only one of us could stay in the ICU room. Rylae rested comfortably, but the only other furniture was a wooden chair for a single person. On this night, I was introduced to Ronald McDonald House and the invaluable service they provide families of hospitalized children.

My wife and I took turns staying in the ICU and the room provided by Ronald McDonald House. This allowed us to wash and rest. The house also provided complimentary food and a small kitchen. The rooms there were very comfortable and clean, and it felt like an absolute luxury at the time. Observing how parents stood guard over their children while they were in the ICU unlocked a new world of dedication that I realized happens automatically through parental instincts.

Our second stay at a Ronald McDonald House, above, was near a hospital in Singapore. (Photo by Richard E. Poulin III)

Ronald McDonald House

Since that emergency, we have stayed at four Ronald McDonald Houses in three countries due to Rylae-Ann’s frequent emergency hospital admissions. This international group provided a service that is difficult to express in words, but families around the world can attest to it. Some homes had minimal facilities with only the basics. Others, like the Ronald McDonald House in Taipei, Taiwan, had several floors and included activities for children and parents.

Dinners were spent meeting other families who were in similarly challenging situations. We ate and talked together. Despite the horrible predicaments that brought us together, it was therapeutic to discuss things with other families. There were breaks of shared laughs and smiles. We offered one another encouragement and helped however we could. We are still connected with many of these families from the initial deep bonds we developed during our relatively short time together.

Our stay was made brighter by those who donate their time, resources, and money. Strangers came to help prepare and serve food. Afterward, they cleaned up and tried to take away daily chores so we could focus on caring for our children. These generous acts made a significant difference. The food was donated, and the operational costs were all supported by donations.

At left, Rylae-Ann’s mother, Judy, shows off a bracelet she made while a volunteer comforts her daughter at a Ronald McDonald House in Taiwan. (Photo by Richard E. Poulin III)

Small change, big difference

Ronald McDonald House Charities has several organizations, including Ronald McDonald House, all around the world. Since 1974, Ronald McDonald House has supported parents caring for their seriously ill or injured children. For a minimal or no fee, families have access to lodging, a home away from home.

I had heard of Ronald McDonald House before I needed its service, but I never donated or paid attention to it. Now I have seen firsthand how vital organizations such as these are. It is essential to support similar programs by donating time or money. Donating your time provides the greatest reward to those lodging at the home and yourself.

Giving money can be difficult for parents of children with high needs. I accomplish this by passing the popular coffee branches and seeking out the companies that support organizations like Ronald McDonald House. In addition, they usually have a collection box or ask you if you would like to round up your purchase with your change going to charity. By being thoughtful about who you give your business to, you can divert funds to a beneficial organization of your choice.

This small gesture allows a family to be kept together during a difficult time and removes worries about minor issues that hadn’t yet crossed their minds.

Note: AADC News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of AADC News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to aromatic l-amino acid decarboxylase deficiency.