Hello to our beloved friends and family!
Remember the awesome FisherFest tennis festival from 2014? That was our family's first fundraising effort to benefit research and treatment of Osteogenesis Imperfecta (OI). You all stepped up in the biggest way, donating more than $20,000!
Now it's 2016 and FisherFest is hitting the road!
In July, we're headed down to DisneyWorld to participate in the OI Foundation's National Unbreakable SpiritŪ Walk-n-Wheel: Baltimore, 2018 scheduled for July 12, 2018
It's a family affair: Les and Laureen Nicholson plus Erin, Alci, Alci III and Fisher will be walking and wheeling to raise funds.
We'd be so grateful for your support.
If we had you at "hello", just click on the Donate Now button above.
If you'd like a little more background on OI and Fisher's journey, keep reading...
There are about 50,000 people in the United States affected by Osteogenesis Imperfecta (OI) - also known as brittle bone disease. So it's a pretty rare genetic condition that makes bones fragile and easily broken. A person living with OI may experience just a few to hundreds of painful fractures over a lifetime. There are other medical issues as well, including fragile teeth, loose joints, trouble eating and digesting, as well as serious spinal and pulmonary conditions related to OI.
In Fisher's case, he was born with two broken legs, a broken arm, and at least one cracked rib. We carried him on a pillow for the first few months trying to figure out just how fragile he would be. After several months of gentle trials, we found that we could hold him upright against our chests without damaging his ribcage and spine. When he was a baby, his right arm would break quite often when he would roll or crawl across the floor. When he tried to pull to a stand, his leg bones would break and we would end up at the ER. Some people with OI only have a few breaks, others suffer so many over their lifetime they just stop counting. Now 8 years old, Fisher has had nearly 40 fractures so far, but no digestive or breathing issues, thankfully. On the mild to severe scale, Fisher falls into the moderate range of OI.
Thanks to your donations and the great research done by experts in Montreal, Omaha, NIH, and at Johns Hopkins, Fisher is able to receive a bone strengthening medication and state-of-the-art orthopedic care. When he was 2 and a half, he had titanium rods inserted into his femurs (thigh bones) to help give support and reduce the number of injuries. After that, Fisher took his first steps when he was 3 years old. Each year, there are still down times and recovery times. Life is basically one big accident waiting to happen. Last year took its toll on us -- awful tibia and femur fractures led to two more major surgeries.
Through it all, Fisher has developed the most amazingly positive and whimsical personality. After his latest operation, Fisher took to calling himself Wolverine after the X-Men character who has metal layered onto his skeleton! Now in 2nd grade, Fisher enjoys (okay, endures) school, has tons of friends, LOVES video games and youtubers, plays the piano and drums, adores his brother, Alci, and is beyond excited to go to Disney World for the first time.
And he definitely possesses the one thing every person living with OI has in common… an Unbreakable Spirit®!
If we've learned anything from our journey with OI, it is to deeply appreciate and revel in the good times, the joyful moments, the warmth and affection of good friends and caring relatives. We are so grateful for your love and friendship.
We would be honored if you would show YOUR Unbreakable Spirit by supporting the work of the OIF Foundation and the medical experts who strive to help Fisher -- just click on the DONATE NOW button at the top of this page.
We truly appreciate your time, consideration and generosity! Erin, Alci, Alci III and Fisher Ortiz & Les and Laureen Nicholson