Alexis Holmgren's quilt    (Quilt Closed)

Child Interests

Alexis is a life-long Girl Guide. She loves law and science (especially biology and genetics). She is a traveller and loves to explore the world. She has a white 12 year old bunny that she loves dearly. She loves writing, jellyfish, photography, unicorns, knitting, and zebras. She’s an advocate for diversity and inclusion.

Her favourite show is Law & Order: SVU. She met the cast on her Make A Wish trip and Mariska nicknamed her “Brave Heart”.

Her favourite colour is pink. She is red-green colourblind.

Biography

At the age of 12, Alexis witnessed the aftermath of her mom surviving 3 sudden cardiac arrests (with a brain injury) leaving her with PTSD. When the cause was found to be a rare, genetic sudden arrhythmia death syndrome, Alexis was told she had a 50% chance of having inherited the condition. When she went for testing, the results were clear well before her genetic testing came back; Alexis has Long QT like her mom, placing her at high risk of sudden cardiac arrest and death. Prior to her diagnosis, Alexis experienced three cardiac events from Long QT that resulted in near drownings from fainting in the water. At the age of 14, she was implanted with an internal heart monitor (loop recorder) to monitor her heart at all times, as her medication was not providing enough protection. When she was 17, she met the top doctor to specialize in Long QT. He was very upfront with her and told her she would be dead within five years without a major change in her treatment plan that included an incredibly specialized heart surgery called Left Cardiac Sympathetic Denervation she would have to travel to the USA for and having an ICD/pacemaker implanted. She had both surgeries performed later the same year in Minnesota. The Left Cardiac Sympathetic Denervation unfortunately left her with the rare complication of severe 24/7 nerve pain. To date, she has had 6 heart surgeries. Alexis takes medication twice a day every day for her heart as well. There is no cure for Long QT. In December 2017, Alexis’ aunt died from the same heart condition she has, Long QT. She was previously a cardiac arrest survivor, before she passed.

At the age of 12, Alexis started having a severe allergy to sunlight. Every time she would go out, she would be covered in extremely painful and itchy hives, become very nauseous, and have extreme exhaustion. It took until a group of medical students reviewed her file at the age of 15 to get the correct diagnosis of an ultra rare true allergy to ultraviolet light and the sun called Solar Urticaria. She has been through countless medications, injections, infusions, creams, steroids, immunosuppressants, and more in an attempt to control her condition without success. She now carries two epi pens everywhere she goes and has to cover head to toe and avoid all sunlight as her allergy is anaphylactic. She cannot even raise the blind in her room as the UV light travels through windows.

At the age of 16, Alexis’ chronic joint pain and instability she had lived with her entire life worsened dramatically. She was diagnosed with Hypermobile Ehlers-Danlos Syndrome leading to severe chronic joint pain, chronic fatigue, dislocations, jaw problems, mobility challenges, and more. She walks with bilateral ankle and knee braces and uses a cane (with a part time wheelchair or scooter for longer distances).

Alexis is incredibly medically complex and deals with many health challenges. She has been through countless doctors appointments, medications, hospitalizations, therapies, other treatments, and complications from her conditions. In January 2020, she persevered and graduated high school two years later than her peers due to her health issues.

Patterns

Squares received