Alysa is a planner, but when she became pregnant with her first child she entered a world that most parents can’t plan for: the serious illness of a child. Alysa and her husband Logan were overjoyed to learn that they we pregnant after trying to conceive for over a year. They felt like their lives were transforming into what they’ve always dreamed of, and knowing that their family was growing and that a little bundle of joy was only months away.
There was a lot of excitement that had been building for weeks. Alysa and Logan were thrilled that they were finding out the gender of their baby at their 18 week ultrasound. The appointment started out typical with lots of chatter and a few moments with nervous laughter. But the energy in the room shifted, and Alysa noticed that the technician was becoming less chatty and becoming more focused. A 20 minute ultrasound turned into hours, hours of waiting and wondering. The new parents felt their whole world come crashing down when the technician brought a doctor into the room. The doctor couldn’t quite say what was wrong but he told Alysa and Logan that their daughter’s extremely sick.
Alivia just after she was born.
Thoughts and questions rushed through Alysa: Was her daughter going to be ok? How sick is she? Fear and uncertainty came barreling at them. The news practically brought them to their knees. Alysa needed information to process and plan for a life she had never imagined for her family. The only way to get answers was to wait for her daughter to grow and stay in constant communication with doctors.
Alivia came into this world in a whirlwind. Alysa and Logan had planned to visit Edmonton before the birth of their daughter to meet their medical team and take a tour of the Ronald McDonald House that they would call home. But Alivia had other plans. She was born at 31 weeks weighing a little over 3 pounds. Alysa was experiencing some discomfort at home, but nothing that indicated she was in labour. She decided to get check out at the hospital, but due to poor cell reception Alysa couldn’t reach Logan. After driving herself part way to the hospital, receiving assistance from the owner of a convenience store, and a bumpy trip in an ambulance, Alysa was simply relieved that her husband made it in time to witness his daughter entering into this world.
Alivia after her first open-heart surgery.
Alivia was born with a deletion in her chromosome which has been the root of most Alivia’s medical concerns, including heart disease. She spent her first 75 days in the hospital undergoing countless tests. After growing stronger and showing her medical team just how resilient she was, Alivia had her first open-heart surgery at seven months old.
Alivia showing off her smile with parents and Ronald McDonald House board members.
Doctors thought that this surgery would be a fix for Alivia for years to come. Unfortunately after a chain of unforeseen events, doctors had to perform an emergency re-do of the surgery. A four hour surgery turned into 17 hours with Alysa and Logan praying for a miracle. Alivia fought for her life for four days and showed her parents and her medical team that she was strong. It was at a point of no return, but miracles do happen and she wanted to fight. And she has kept fighting ever since.
“Becoming a parent of a medically fragile child you learn really quickly that you have to adapt and think outside of the box. You have to be innovative and always have forward thinking. If you don’t you can get stuck in a rut and that rut can be really dark and scary, and very hard to get out of,” says Alysa.
Alivia playing at the Ronald McDonald House.
Alivia is almost four years old now. Her heart is only functioning at 18%, but you wouldn’t know it to look at her. She is a little ray of sunshine with a smile that lights up any room. Her personality draws you in. For a young girl with limited verbal communication it is easy to see that Alivia is very intelligent because she has other ways of getting to know you. She sees her mother getting close to other parents staying at the House and she has started to form strong bonds with those around her.
Making hospital time a bit more fun.
The Gallant family is in their third and longest stay at the Ronald McDonald House in Edmonton. Since they first walked through the doors they have embraced community living and been advocates for others, especially those new to the House. They encourage caregivers to take part in all of the programs that have helped them through their journey.
Alysa and Logan have been focussed solely on their daughter for almost four years. In that time they have seen their own needs set aside. Since coming to the House, they have embraced the Rejuvenate Program through haircuts, massages, and yoga, ensuring that they can feel their best and be the caregivers that their daughter needs. Alysa even had a complete hair makeover thanks to one of our salon partners, going from long locks to a spunky pixie cut. She now encourages other caregivers at the House to sign up whenever these experiences are available and shares her story of transformation as inspiration.
The Gallant family in the Time for You room.
“I have a hard time being at the House when Alivia is in the hospital, but I know that I need to take time to shower, rest, and eat. When I come back from the hospital and there is a warm meal or leftovers that I can heat up through the Meals that Mend Program, I feel so grateful for the incredible community who makes it happen,” says Alysa.
Alivia putting on her braces for physical therapy.
Before making the Ronald McDonald House their home, Alysa and Logan took turns sleeping at their daughter’s bedside due to the limited space in the hospital room, and even sleeping in their vehicle. Hotels were too far away from the hospital for Alysa and Logan to even consider staying at. Now they have a community of support from other families, staff members, volunteers, and donors that the Gallants can lean on and call family.
Alysa getting a haircut in the Time for You room.
The next steps in their journey are only partially known. Alivia needs a heart transplant, but that means trading one set of problems for another. A a transplant is not a cure as it comes with its own set of health concerns. Whether she struggles with one or several things that heart disease brings, her family is ready to champion for her wellbeing. All her parents want is to see their daughter enjoy life and see a life outside her illness. While she may suffer from heart disease and all the challenges that it brings, Alivia is not defined by her illness. She might look tiny but she is mighty – and she has a community behind her supporting her every move. Right now Alivia and her family plan on continuing their fight while embracing every opportunity they have to enjoy life right now.
Alivia celebrating Easter with her family.