Landen's medical journey began with a diagnosis of spinal muscular atrophy (SMA), an exceptionally rare genetic disease, immediately after his birth on February 5th, 2022. SMA is a progressive neurodegenerative condition that primarily affects the motor nerve cells in the spinal cord, leading to profound muscle weakness and impacting fundamental activities like breathing, eating, crawling, and walking.

Landen's case was particularly severe, classifying him as having SMA Type 0. This rare subtype, characterized by an early and aggressive onset of symptoms, typically carries a bleak prognosis. When he was born, Landen required immediate intubation and mechanical ventilation to sustain his breathing since his muscle weakness prevented him from breathing independently. His ability to move was minimal, if not entirely absent, due to the disease's effects on his muscles. In response to these challenges, Landen underwent crucial medical interventions. He received a tracheostomy, a procedure to create an artificial airway through the neck, to facilitate his long-term reliance on a ventilator. Additionally, he required a gastronomy tube to provide nutrition since his muscle weakness rendered him unable to eat by mouth.

The medical community predicted a life expectancy of only 2 to 6 months for Landen, given the severity of his diagnosis. Remarkably, after spending 40 days in the Loyola NICU, his family made the courageous decision to bring him home. This involved acquiring the necessary knowledge and skills to provide his care themselves, as they did not have full-time nursing support. March 17th, 2022 marked the day when Landen returned to his family's care at home. It was a momentous occasion, defying the odds and earning the moniker of the "luck of the Irish" for his family. At nearly 17 months old as of July 2023, Landen has continued to astonish his medical prognosis.

Despite the progressive nature of his condition, Landen's indomitable spirit has seen him thrive in his home environment, supported by his loving family, including his older brother Cash (family pet), and a new baby brother expected to arrive in late November or early December of 2023.

Nonetheless, it is important to note that Landen's condition has deteriorated over time. His motor skills have further declined, with the loss of the ability to open and close his eyes or move his fingers. A particularly challenging phase of his journey involved the development of severe skin and vascular issues, leading to open wounds on his extremities and face. Fortunately, Landen has been prescribed a medication that, based on a limited study, demonstrated success in promoting the closure of these wounds. At present, his skin issues appear to be under control.

It was Landen’s mom, Nicki, that first reached out to A Special Wish - Chicago.   It was her wish request for some necessary items to help in the day to day life with her son.  A Special Wish - Chicago immediately put together a Wish Team for Landen to help with this very needy request.  After talking with Nicki and Ryan (Landen’s dad), a wish list was made for items that would be most beneficial.  The Wish Team got to work to make this happen asap! 

We are now happy to say that Landen's everyday life at home is filled with activities that bring him joy, such as going for walks, being in the water, listening to books, receiving comfort through touch and holding, and enjoying the company of friends and family.  It was truly an honor for everyone at A Special Wish - Chicago to be able to help this young family in their time of need. 

Ultimately, Landen's story serves as a poignant reminder of the resilience of the human spirit and the enduring power of love and family support, especially in the face of rare and challenging medical conditions. It is a story of hope, determination, and the unwavering commitment to make the most of each day, while also advocating for medical advancements that could one day eliminate the suffering caused by genetic diseases like SMA.

Heartfelt Thanks

Dear Special Wish Chicago,

On behalf of our son Landen Bertocchi, we cannot thank you enough for the generous gifts you provided our family with. In doing so, you have made our everyday routine with Landen that much easier. Since receiving our gifts, we have used the VW Wonderfold Wagon and a portable aluminum ramp almost everyday! When using the wagon, we also use the Special Tomato tumbler seat in order to best support Landen while we are out on walks since he is nonambulatory. The Special Tomato seat also gives us another seating option for Landen at home since it has a nice stand with wheels that we can push him around the house in. We couldn’t be more grateful and appreciative of these special gifts. The world makes it extremely difficult to get equipment needed for individuals with disabilities. We have fought with our primary insurance and medicaid to get a P Pod chair, which took us 6 months to receive. The volunteers and donors from Special Wish Chicago have truly changed our lives. The items we requested would have taken months to a year to get through insurance. With Landen only given 2-6 months to live, we never knew how much time we have with him. We have been blessed to have just over 18 months and counting, and our family is so happy we can do the things we love with him on a daily basis just by having this equipment to help us. I have attached a couple of photos of us using the equipment with Landen. Again, we cannot thank everyone who had a hand in making this wish happen enough. We are forever grateful!

With love,

The Bertocchi Family

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