Aurora

Aurora, born in September 2019, was diagnosed with Intermediate Salla disease, right before turning one year. At around five months of age, we became aware of her weak muscle tonus and some cases of Nystagmus, but besides that she developed as expected and she looked perfectly healthy. After initial assessments by a local doctor and physical therapist we were referred to neurologists at Oslo main hospital (Ullevål Sykehus). The neurologists though she had a mild form of CP at first, but she quickly got the right diagnosis after an MRI of the brain, followed by genetic testing. Aurora experienced improvements physically and mentally until the age of three years, but her development stagnated after that. At four years of age (January 2024), she died after an incident of respiratory arrest. Her death was a tragic accident and highly unexpected.

We became part of STAR right after Aurora received her diagnosed. Although Aurora never got to experience the medical breakthrough that we know is coming, we got great help from being part of the support network that the STAR community offers. We are extremely grateful for what Jessica has done for these children and we will continue to be part of STAR in the future.

Aurora was the most positive person we have ever met, and she enjoyed her life to the fullest without any regards of all the limitations her disease gave her.

Below is our letter to Aurora, based on the speech we held in her funeral February 2024.

Anette (mom) and Christian (dad)

Dear Aurora, our beloved sunshine,

It feels utterly surreal to write this letter to you. It's only been weeks since we were all together in the kindergarten, and you smiled at us in a way that only you can. Your joyful laughter, intense gaze, and beautiful smile, reserved for those you loved most, are what we will miss most about you.

The years with you were unlike anything we had ever dreamed of when we thought about having children. But we wouldn't change a thing. Being with you and caring for you these past four years has been the most demanding yet profoundly meaningful experience of our lives. The emptiness you leave behind is inexplicably large. We have had ups and downs steeper than most people will ever experience in their lifetimes. But when we were at the top with you, life was perfect. There is no doubt life would have been easier without Salla and all those challenges your disease gave you, but perhaps it was all the battles we fought together that formed the unbreakable bond between us. And you were always the bravest of us all, hardly ever complained, and lifted us up like only you could. We are incredibly proud of you and all that you have accomplished, Aurora.

Despite all the challenges, we have imposed very few limitations on our lives. Just think of all the places we took you; you have visited every county in Norway, been on mountain hikes in Northern Norway, and to the Pulpit Rock on the west coast. Pulpit Rock might not be the most challenging hike, but there were many American and Japanese tourists we met along the way who looked at us quite oddly as we carried you and your five-month-old little brother to the summit.

We have been to France with Grandma and Grandpa. There, you were truly in your element, like a diva on the inflatable mattress in the swimming pool. We have been to the National Institute of Health in Washington to contribute to research on your disease. And we can only hope that all the medical tests you patiently endured there will help other children with your disease in the future.

Yet, the most important journeys were the ones we shared in our everyday life, on the local gravel paths on the bike or in the stroller. It turns out it is not about how challenging the mountain is or how exotic the destination; what mattered was having precious moments together with you.

We have always liked to keep to ourselves and manage everything independently, but when you came into our lives, we were forced to open our home and lay our lives bare to strangers, just to provide you with the help you needed. There were assistants, physiotherapists, nurses, doctors, and many, many more. But your radiant spirit quickly turned these strangers into invaluable supporters and good friends of the family.

You were a magnet on wonderful people, and we are so grateful that you introduced us to a world of caregivers we did not know existed before we had you. It is almost unbelievable to think that when we were told to gather your closest ones at the National Hospital (Rikshospitalet), there were forty people who dropped everything to say their farewell.

In addition to having a fantastic personality, you were also strikingly beautiful. Your big blue eyes, dimples, and golden curly hair always made you look incredibly stunning. In our book, you are the definition of beauty.

You also got to experience the joy of becoming a big sister twice. You loved the chaos they brought around you, and they loved teasing you. Magnus did not need a stroller to learn how to walk; it was much more fun for him to push you around in one of your aids. They had buttons he could press to lift you up and down, and he would get enthusiastic laughter in return.

In addition to all the memories and new perspectives you have given us, you have truly changed our whole family. Right from the start, you have been a family project, and we called ourselves “Team Aurora”. All the trials and experiences we have had together because of you have bound the entire extended family together in a very special way.

It feels like it was just yesterday we held you for the first time, Aurora. It will forever be the happiest moment of our life.

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