On August 29, 2014 Quinlan John Weekes was born. From the very beginning of his life, he was impacting others. While his little life might have only been two and a half years long, the impact he made on others is still being felt.
The world changed for Quinlan and his family on December 31st, 2014, just as the year was coming to an end. Quinlan’s mom, Lindsay, noticed that his lips were turning blue and he wasn’t breathing. It was decided that Boston Children’s Hospital was the best option.
Quinlan was given a room on the neurological floor, where it was discovered that he was having subclinical seizures. Unlike the seizures so many of us think of when we hear the word, there weren’t any outward signs of a seizure for Quinlan, other than causing him to stop breathing. He was given medication that helped to control the seizures and was able to go home on January 28th. Throughout the 28 day stay, Lindsay and Bear spent as much time at the hospital as they could, sleeping in chairs and cots. When Quinlan was discharged, there was nothing indicating that he would have to return to the hospital any time soon.
Two weeks later Quinlan contracted RSV, a virus that causes common cold symptoms in adults but can be extremely dangerous for children, especially children with underlying issues like Quinlan. Over the course of the following weeks and months, Quinlan was intubated numerous times due to complications from RSV and pneumonia. More tests were done to determine what was causing all of Quinlan’s issues. It would still be quite a while before a diagnosis was made.
Quinlan was given a feeding tube. Different seizure medications were tried, tests run, and procedures done. In May of 2015, the decision to give Quinlan a trach to help him breathe was made. It was not an easy decision, for Quinlan’s parents or for the doctors and medical staff involved. Despite the medications, it was impossible to stop all of the seizures. And while a majority of them went by unnoticed, that wasn’t always the case. The trach, and the accompanying ventilator, would give Quinlan oxygen even when the seizure was causing him to stop breathing. In the long run, the trach was a lifesaver in more ways than one.
Quinlan was finally able to come home on November 12, 2015. For more than nine months, he had been splitting his time between Boston Children’s Hospital and Franciscan Children’s Hospital. Both of these establishments were amazing. The doctors, nurses, and staff did everything in their power to make sure that Quinlan and his family were safe and comfortable. The staff of these hospitals became more than just staff members. They became a part of Quinlan’s ever-growing family. The hospital became a second home, not just for Quinlan but for his family as well.
Who Your Donation Is Helping
For families of children spending prolonged periods of time in the hospital, the hospital room becomes more than just a room. It becomes a home, a home full of machines and bright lights and beeping noises, but a home nonetheless. So many aspects of long hospital stays are scary. There are endless things to worry and stress about. Most of these things we cannot help with. But, there are some things that we can help with.
In the ICU at Boston Children’s Hospital, where Quinlan spent a majority of his stay, the average stay for a patient is 5-6 days, but many children end up staying longer. These stays consist of families driving to and from the city, relying on cafeteria food or the nearby restaurants, and paying to park in the parking garage. Parking at Boston Children’s Hospital is $10 a day. For a five day stay, it’s $50. Having to take two cars doubles this. For Quinlan’s family, this meant paying $10 a day (per car) for over 100 days. In total, his parents spent upwards of $3,000 on parking, both while he was an inpatient and afterwards.
There is very little help for families with parking costs. There are foundations that assist with paying for parking, but they require a diagnosis in order to qualify. For children like Quinlan, whose diagnosis doesn’t come quickly, or whose diagnosis is extremely rare, there aren’t the same opportunities as others. There are no foundations for mutations of the Brat1 gene, Quinlan’s diagnosis, just as there aren’t for many of the over 7,000 rare diseases. This means that for many of the families of patients in the ICU, there is no help.
Spending days in the hospital with your child is scary, and there is no shortage of things to worry about. It’s easy to feel completely alone. Help us show these families that they aren’t alone. Join us in helping them lighten just one aspect of their burden.
In addition to the parking passes, this year we are also going to be purchasing Au Bon Pain gift cards to be handed out as well. If you are familiar with hospital stays, especially at Children’s Hospital, you know that Au Bon Pain can be a lifesaver when nothing else is open and a coffee is necessary. Or when your child has been brought to the hospital in the middle of the night and in the midst of all the chaos you realize you haven’t eaten in hours, Au Bon Pain is the only place open at 2am when you need a sandwich or a hot cup of soup once the chaos slows down.
How You Can Help
Now that Quinlan has passed away, his family wants to honor his memory by helping families at Boston Children’s Hospital so much like their own. Our goal is to raise another $5,000 in honor of Quinlan’s 5th birthday on August 29. That’s 500 days worth of parking. 500 days of having one less worry. 500 meals for parents to keep up the energy they need to get through another day. Having even one thing taken care of makes a huge difference for these parents.
We have one month, from now until Quinlan’s birthday on August 29th, to raise this additional $5,000. Last August we were able to raise $5,000, $1,000 over our original goal of $4,000. Can we do it again?! Help us help families spend as much time with their children as possible and take one burden off their plate.
To read more about the amazing, courageous little boy who has inspired us so much, check out mom Lindsay’s blog: www.thequintessentialabnormallife.com
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