Sofia The Brave

This GiveForward page has been created to give friends and family a place to post comments of love and support.

We are also asking those who feel comfortable to leave a donation that will go toward the medical bills and out-of-pocket costs associated with Sofia's surgery, medical equipment and ongoing rehabilitation. Our goal is to support the purchase of an in-home ergo bike that will allow Sofia to do daily motion therapy on her arm while electro stimulation helps with the regeneration and firing of the nerves in her bicep and hand. Unfortunately this type of therapy is not covered by insurance and will cost $18,000. Reaching beyond these goals, we plan to direct any additional donations to ongoing research efforts to benefit Sofia and other children who have experienced paralysis from this condition.

On November 10, 2012, Sofia went to the emergency room with breathing difficulties. She was initially treated for asthma but her mother soon noticed that Sofia, then 2, was not able to use her left arm. Sofia subsequently underwent a series of treatments at Lucile Packard Children's Hospital at Stanford University. The doctors have concluded that a rare polio-like virus caused inflammation on her spinal cord, which led to the paralysis of her left arm and hand.

In January of 2013 Sofia was evaluated for a possible nerve transplant and, in April, she underwent a 12-hour surgery at Johns Hopkins, Kennedy Krieger Institute. The surgery explored nerve transplant/grafts with the goal of stabilizing Sofia's shoulder and giving her the ability to bend her paralyzed arm into a bicep curl.

Sofia, who is now 4, is the youngest patient to have undergone this type of procedure. Her family was told it could take up to 18 months to see improvement from the cutting-edge surgery and ongoing therapy. Doctors have yet to see any significant developments.

Those who know Sofia best say she is one sweet, brave, beautiful little girl who has charm, charisma and wisdom well beyond her years. She has an incredibly positive attitude and has already found ways to compensate for her new disability. She calls her arm “Lefty” and treats it like a friend. We are all still convinced that with enough attention and determination she will use “Lefty” again someday. With rapid advancement in the treatment and therapy of this type of condition, we are hopeful.

Sofia is not alone. Similar cases have emerged in California. Please read some of the recent media stories about this virus referencing the links listed to your right.