Life-Changing Surgery for Everly Maysuik

2024 has been a long road for the Ego/Maysuik family. In January of this year, they suspected Everly had Scoliosis and began the referral process to Sick Kids. After a long wait to see a doctor, their suspicions were confirmed, and at 11 years old, Everly received a life-altering diagnosis of severe scoliosis. Her X-rays showed a complex double curve, something that likely only got worse as they waited many months to be seen at Sick Kids. Everly’s curve is commonly called an “S” curve. She has adolescent idiopathic scoliosis. Everly was fitted for a brace in June and now wears a back brace 23-hours daily to prevent the curve from progressing. Progression of the curve will lead to restricted organ function, causing extreme pain and limiting her mobility.

Everly began a variety of therapies in addition to bracing in an attempt to hold her curve as much as possible. With scoliosis, the more you grow, the more you curve. Everly is in the early stages of growth with 2-4 years left, meaning that she will need surgery as her curve is already severe. Much to their dismay, Jen and Jeff quickly learned that the Canadian medical system is not very progressive regarding scoliosis surgery. They had the option of a full spinal fusion, that would permanently fuse three-quarters of the vertebrae in Everly’s spine with rods, metal plates and screws. This would eliminate Everly’s motion to bend and connect the spine as one solid unit. Fusion surgery also stops all ability to continue to grow, and the joints above and below the fusion bear the weight of all movement, putting excessive stress and strain on them. There is a high rate of revision surgery required with spinal fusion, and if this is the route chosen, Everly would likely have to have additional surgeries as an adult and live with limited movement and, eventually, pain in the joints surrounding the fused area. Jeff and Jen found it hard to believe that in 2024 this was the option that was being presented. It seems that scoliosis surgical options have not progressed in 50 years.

After months of research and consultations, Jen and Jeff were relieved to learn that Everly is an ideal candidate for a non-fusion alternative called ASC (Anterior Scoliosis Correction) surgery -- which is only performed outside of Canada and not covered by OHIP. This type of surgery would allow Everly to keep a healthy, moving spine and maintain her flexibility and mobility through a tethering method. The surgeon will still use some screws to correct her spine but with tethering versus rods. Everly’s vertebrae will remain healthy and free to move throughout the whole length of her spine. As Everly is still growing, the surgical goal is as she grows with the tether,that her curves will continue to correct even further, providing an even better outcome and quality of life. This will take pressure off her lungs and heart and allow her ability to breath to return to full capacity. After meeting with surgeons in the U.S, Italy, and Germany, Jen and Jeff feel ASC is a much better option for Everly.

Surgery is best done when children are in their early growth in hopes of achieving the maximum correction and the overall best results. Jen and Jeff are in the process of booking surgery for Everly in the U.S in February 2025. They are using their investments and savings to cover the majority of the cost of the surgery to ensure Everly has the best possible long-term quality of life. We are arranging this GoFundMe in an effort to help in any way we can. All funds raised will go directly to the $289,275 cost of the ASC spine surgery. This cost does not include flights, accommodations, any additional fees for a longer hospital stay if there are complications and the months of rehabilitation Everly will need after surgery to help adjust to her newly aligned body and the 8-12 week recovery from the surgery. There will be future follow-up visits to the U.S. Jen and Jeff have chosen this option as there is less than a 2% chance that this procedure will require other surgeries (the lowest revision rate of any scoliosis surgery,) and they feel like this is their best option for the optimal outcome. We all feel that we have to give Everly the opportunity to have the best possible spine-saving surgery available in order to have a flexible spine and freedom of movement in the future, the lowest chance of future surgeries and the best potential to live a normal, healthy life without additional health concerns that can be caused by the procedure available in Canada.

If you have been fortunate enough to meet Everly, you know what a bright light she is: her never-ending positive attitude and love of life. Everly has been wearing her brace faithfully 23-hours a day, doing special exercises 7 days a week, never complaining, and always keeping a smile on her face. She has bruising and callouses from the pressure of the brace, she has had pneumonia and a respiratory infection due to the limited lung capacity because of scoliosis, and with a major surgery looming, she has stayed positive and focused on the long-term and tried not to be overwhelmed and scared by everything that is happening. All of this is a lot for the adults in her life to emotionally manage, and at not yet 12 years old, she is staying positive. Everly loves to sing, dance, act and perform on stage. She is the first one to want to do backflips across the field at school and spends endless hours swimming in the summer. The ASC surgery will ensure that Everly can continue doing the physical activities she loves. It will ensure she will have full lung and breathing capacity, will not struggle with long-term organ and heart issues, and will be able to be flexible and mobile.

Researching and meeting with surgeons and discussing life-altering surgeries for your child is devastating for any parent, it is even harder when the care you need is not available at home. The GoFundMe has been set up to let people come together to show support and hope that it may help to ease some of the overwhelming stress of the situation.

Everly’s family hopes she can have the best chance at a normal childhood and quality of life in the future, with the best chances to live pain-free without future surgeries looming over her. They are genuinely grateful for any support from family, friends, neighbours and the community to help them make this surgery possible.

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Jan 2025 update - Surgery has been booked for February 4. Jen & Jeff are making plans to travel to New Jersey with Everly at the end of January. Everly had her MRI on Sunday and will see her family doctor to complete her pre-op assessment and arrange for a Pulmonary Function Test. Everly will begin meeting with a therapist this week to help her with the emotional and mental preparation and recovery that the surgery will require.