Raquel Bella Hozova Hultman

Raquel was born July 9, 2010, and suffers from Recessive Dystrophic Epidermolysis Bullosa.  She is heavily affected by EB across all her mucosal membranes which include her eyes, esophagus, intestines, and mouth.  Blisters or sloughing occur in all these places, (including her entire body). Raquel is in constant pain.  

Being affected by EB has not stopped or slowed down Raquel over the years.  She has attempted cross country racing (despite its obvious peril and any and everything she can get away with),  before either her nurses or parents put a stop to it for safety reasons.

In 2016, Raquel desperately wanted to join her family and friends skiing and had the first opportunity to do so with Vancouver Adaptive Snow Sports.  At that time, it was unclear to her parents whether the bouncing and numerous areas of potential friction would result in a massive loss of skin; never mind what would happen in an accident should the inevitable happen with a crash.

In the fall of 2017, DEBRA Canada gifted Raquel a sit-ski so she could finally take part with the family in the numerous skiing adventures  - without the inconvenience of booking time, sleds, and instructors with local sit-ski programs.

 Every year since, Raquel has continually tested her boundaries and excelled as a skier.  This year, Raquel is at a point physically and mentally to attempt a solo ski, but for a 12’ tether without the hand stabilization from her father.  Perhaps there will be a point soon (other than the loading of chairlifts and getting across flat surfaces), where Raquel might be able to ski without the tether.

 Powder skiing in Blackcomb Glacier February 2020

 

 U10 Longest jump competition February 2019.

 

Raquel can now ski almost anywhere her sister, family and friends can, even many places her Mom will not. In the last few years, she has answered all the questions about how dangerous skiing could be, and it seems to be the perfect sport for her.  Raquel and her Dad have crashed many times over into race gates, fallen off metal Jib park features, tangled heavily in each other skis at speed, and even been each face down in deep powder after misjudging the depth of a snowbank; and have come out the other side with only a few minor issues.  Thankfully, we have mostly just had great adventures to brag about to whoever will listen.  Happily, during Bella’s Ball fundraising events for DEBRA Canada, Raquel has been able to share the sit-ski experience with a few of her EB buddies.  Helping them enjoy the speed, wind, jumps, and spectacular scenery that only skiing can offer. The next feat on Raquel’s radar is Helicopter skiing or deep backcountry skiing with snowmobile access. 

Thankfully, Raquel has an amazing community of skiers and friends that support her efforts and fearless nature to assure it will take place.  Raquel and her family are extremely grateful to DEBRA Canada for her sit-ski and wish snow were on our mountains 12 months of the year!

 

 

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