Hi there. My eldest son Elano was born with NF1 also known as Neurofibromatosis, an incurable genetic disease that causes benign tumors. "Neuro” means nerve and “Fibroma" is a swelling or bump of fibromous tissue. A neurofibroma is a swelling due to a growth of cells that surround nerves.
While the NF1 has allowed him to have a fairly normal life, it limited how long he can stand and forced a limp. He has had multiple surgeries in his left leg to have fibrmos removed and over the years doctor visits, testing, MRI’s and X-rays were necessary to track the pace and severity of the growths.
Focus on what you can do rather than what you cannot…
This has been Elano’s mindset. He has been a real trooper and traveler. Over the years he has participated in basketball, baseball, soccor, golf, karate and track. Many times at a slow pace, sometimes with a brace on his leg and a lift in his shoe.
He has camped and climbed the ranks of Boy Scouts, played the piano, participated in school activities with enthusiasm and endurance. With a smile on his face even when he was in discomfort and pain.
He’s worked hard in school, graduated from Santa Monica Community College and then went to Cal State Northridge and recieved his Bachelor of Arts in Journalism. A model employee and cooperative team player, Elano has a resounding desire to be independent and included.
Achieving in spite of…
And in July, things got more difficult.
The tumor in his left leg, in about 48 hours, doubled in size, more than 21 inches around. Elano couldn't fit into pants, just basketball shorts and, whenever upright for more than a few minutes, got dizzy before passing out. Driving was not an option. He was admitted to UCLA emergency hospital for almost 2 weeks.
Teams of doctors have examined him; they've taken MRI's, x-rays, sonograms, Cat scans and multiple testing to determine the cause to no avail. Upon release with no diagnosis as to what and why this happened their only suggestion was amputate his leg.
We would like to explore other options leaving that as our very LAST resort.
We want to leave no stone unturned...
At this time there is no cure for NF1 and we want to exercise all options. This includes a specialized organic diet and nutritional supplements, acupuncture, reiki, yoga, hyperbolic therapy, attending Optimum Health Institute in San Diego and any other alternative medical practices. The worst case is that Elano may have to have amputation, but at least he will be in the best of health for a safe and quick recovery, but more importantly we would have known that we tried.
This is where we need your help...
We are seeking donations to help fund alternative treatments and as you know these practices are not covered by insurance and can be very costly. Your participation and financial support will not only change Elano's life, but more importantly the lives of ALL of those with Neurofibromatosis and other conditions that would lead to amputation. We want to experience the success so that we can be an inspiration to all and encourage them to believe and have the strengh to exercise all options.
We've schedule a FUNraising Walk and Birthday celebration for Elano on Saturday, October 18th from 9:00am~12:00pm in beautiful Bell Canyon, Ca.
Save the date, dust off your sneakers and stay tuned - more details to follow in our upcoming posts.
With much love and appreciation we Thank You, Thank You, Thank You!
Read more about Neurofibromatosis at http://www.nfnetwork.org/
- Pierre Sauvaget
- Laura Paden
- Francine Morris
- Terence Hill
- Buntu Segal
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