Hello to our beloved friends and family!
Every two years, we put our wheels to the pavement and raise money for research and treatment of Osteogenesis Imperfecta.
On July 12th, our family will head to Baltimore, MD, 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: Erin, Alci, Alci III and Fisher as well as Les and Laureen Nicholson and maybe, if we're lucky, Margarita and Alcides Ortiz-Ferrari, as well as a few others from our crew will be walking and wheeling to raise funds.
We'd be so grateful for your support. This is the OI Foundation's major fundraising effort. We only ask once every couple of years because we know how many other necessary causes there are for you to support.
If we had you at "hello", just click on the Donate Now button above. THANK YOU!
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. Important OI FACT: OI is not a calcium issue, it is a collagen mutation. 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 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. As he tried to pull to a stand, his leg bones would crack and splinter and we would end up at the ER. If you've ever broken your femur, you know how excruciating the pain can be. Some people with OI only have a few breaks, others suffer so many over their lifetime they just stop counting. Now 10 years old, Fisher tallies more than 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.
Ihanks to your donations and the great research done by experts in Montreal, Omaha, NIH, AI Nemours/Dupont, Children's National Medical Center, and 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. This year - next week in fact, on July 5th - Fisher will undergo his third major operation. He has outgrown his very cool expanding rods in his femurs, so his orthopedic surgeon will replace them with new ones. It's pretty invasive and recovery takes quite a while. But proper bone alignment and the internal support helps Fisher and many people with OI fracture less often and do more activities - like walk!
Through it all, Fisher has developed the most amazingly positive and whimsical personality. He just finished 4th grade, earned straight A's in school, has tons of friends, LOVES video games and youtubers, plays the piano and drums, swims like a Fish, competes on a wheelchair basketball team, and adores his brother, Alci.
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 encouragement.
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 plus the entire Nicholson and Ortiz-Ferrari families