Oscar's Hip & Leg Surgery

Oscar is a 10 year old boy born in Boulder, Colorado with a very rare condition called Kniest Dysplasia.  This condition occurs less than 1 in 1,000,000 live births and is caused by a mutation in the COL2A1 gene on chromosome 12.  The COL2A1 gene is responsible for producing type II collagen.  Oscar was born with cleft palate, severe myopia vision loss, severe-profound hearing loss, and dwarfism.  Oscar spent the first 8 weeks of his life in the NICU before finally coming home with a feeding tube due to the cleft palate.  He was fed via tube for 2 years along with intensive feeding therapy, speech and language therapy, physical therapy, and occupational therapy.  6 surgeries later Oscar is a thriving, intelligent, and gregarious little boy who loves to read, swim, and play video games.  Oscar skis on the weekends in a seated bi-ski with Ignite!, the adaptive ski program at Eldora Mountain and is a new member on the sled hockey team in Littleton, CO sponsored by the Avalanche!

Oscar is able to walk for short distances and with significant pain.  He uses a mobility device the majority of the time for distance, speed, and pain/fatigue management.  It is time in Oscar’s growth for a major hip surgery called a double hip extension osteotomy and metal pins in the lower legs and ankles for guided growth as the bones become more deformed with growth and development.  The surgery requires a specialist who practices out of state in Portland, Oregon.  Oscar will need to spend 4 nights in the hospital followed by 2-3 weeks recovery in Portland before being able to return to Colorado.  He will be completely wheelchair bound, non-weight barring for approximately 2-3 months followed by intensive physical therapy. Oscar will need to return to Portland for a 6 week follow up and again a year later for the metal plates and pins to be taken out.  

The money we are trying to raise will be used for flights, extended lodging in Portland, transportation, meals, medical equipment not covered by insurance, and time off work.  We are estimating $10,000 for these costs.

Oscar also needs a new mobility device which costs approximately $4,000. We live in the mountains west of Boulder, CO and the environment is extremely snowy, windy, steep and cold.  This is very limiting for a child with mobility challenges.  We urgently need to asphalt our driveway and build a ramp to get Oscar between house and car during recovery and after.  The estimate for this project is $15,000. One day we hope to build an attached garage for independent mobility between house and car!

The funds raised will be used 100% towards Oscar.  We appreciate you taking the time to read our story and are eternally grateful for any help contributed towards Oscar’s journey to independent mobility.  


Respectfully,

Amy & Kenny Shrum
Oscar’s parents