Help Alexa ski again!

Hi! If you don't know me, my name is Alexa Kate (AK for short), and I’ve loved skiing for as long as I can remember.

My family has always been a skiing family, so as a toddler growing up in Truckee, California, they put me on skis as soon as possible. I started on the Tahoe Donner team when I was 3 years old and immediately fell in love. When I got older we moved away from Truckee, but we never stopped skiing. I joined the Palisades teams, starting with the Mighty Mites (where I later coached!) and then the SVST Development and Far West race teams.

When I was 12, I was diagnosed with a rare autoimmune disease called Systemic Juvenile Idiopathic Arthritis (SJIA) also known as Still’s Disease. This means my innate immune system attacks my joints and organs, causing inflammation and damage. While my systemic involvement has been relatively well controlled by my medication, unfortunately my joint involvement has not. My joint damage has progressed to end-stage arthritis/ankylosis (fusing) and contracture of multiple joints, especially in my lower body.

When I was first diagnosed, my right ankle was my only affected lower body joint. Skiing went from my favorite sport, to the only stand up sport I could participate in, as I was able to adapt my skiing to accommodate my non-articulating ankle. On land I needed a crutch to walk, but on the mountain I could ditch my crutch and fly away on skis. Skiing was the one place I truly felt like everyone else, it was my escape from SJIA.

Two years ago I experienced a severe disease flare causing my disability to progress significantly. The rest of my lower body joints became involved (hips and knees). My 2022 season ended early when I no longer had the joint range of motion to continue walking and — even more heartbreaking to me — to continue skiing. I had to learn to adapt my life to living in a wheelchair. 

That's when I started sit ski lessons at Achieve Tahoe. I was afraid that I could never ski at the level I used to before becoming a wheelchair user, but Achieve Tahoe showed me that I was wrong. I've spent all my Winter break time off of college the last two years working towards monoskiing at the level I used to stand up ski.

I feel grateful that my disease is unlikely to affect my large upper body joints and I plan to take full advantage of my remaining mobility. Now that I have progressed to independently skiing intermediate terrain, I am ready to get my own monoski, rejoin my friends and family on the slopes and get back to racing! Skiing is an expensive sport, but adaptive skiing is much more expensive. I’ve been quoted about $9,200 to purchase the DynAccess Hydra monoski rig, $584 for Enabling Technologies outriggers, and $559 for monoski-safe bindings - totaling over $10k. This doesn't even include the cost of skis themselves which are often broken several times a season by sit skiers due to the high amount of force that is put on a single ski.

I plan on getting some of my funding through grants, but because my disability is caused by a disease/illness I don't qualify for most big grants (ex. High Fives Foundation) as most are dedicated to those disabled from accidents. I greatly appreciate any and all support you can offer.

Hope to see you on the mountain soon!!

Alexa :) 

@alexak8te