www.walkonproject.com

Project is an initiative launched by the family and friends of Jontxu, a marvelous boy afflicted with a rare disease. The objective is to raise funds for RESEARCH INTO TREATMENTS for leukodystrophies through the organization of musical activities and events.

On October 13 2008, our wonderful 6-year-old Jontxu (Johnny) was diagnosed with a neurodegenerative disorder—one of those “rare” genetic diseases. It was a bolt out of the blue; nothing had warned us of the damage he’d already sustained. Until then (and afterwards too), Jontxu had been an outstanding child, a wonderful son, loved and admired by friends and classmates, affectionate, with an enormous capacity for enjoying the small things of life—a happy boy who knew how to make others smile and laugh. An angel.

That October 13^th—just yesterday—our life veered off course hurling us into unknown territory. There was no time for lamentations; what we needed to do was pick up our gear and find a new route up the hills ahead to keep Jontxu alive. And with the help of others, that’s what we did. Today, Jon is still with us, fighting with all his might to enjoy each moment, each small blessing despite the enormous limitations imposed on him by the disease. Many people have joined us on the way. Dozens of impossible “gifts” have been showered on us, enabling us to achieve the best of all feasible presents. Real angels have accompanied us, old friends, new friends, scientists, doctors, impossible people, incredible situations that strengthen our belief in people’s inexhaustible capacity for love. And EVERYONE, absolutely ALL of us who have shared this road have been, and are being, enriched day by day by Jontxu and what his life means to us.

But our climb has only just started. We have saved his life, but we’re hoping for much, much more. What we hope is that some day there will be fewer bar-riers between Jontxu and the outside world so that he can enjoy each minute more intensely. To make this happen, we have a clear objective: to find effective treatments that can “fix” the damage caused by these dreadful diseases: leukodystrophies. All of us on this road feel the same pain, but we also share hope, optimism, the capacity to benefit from small things, to feel affection, warmth and tenacity. Together, everything is possible.

For Jontxu’s case is not the only one. There are many, many more, although it doesn’t seem that way—not until you come into direct contact with them and meet them face to face.

Mikel (Jontxu’s dad), used to play in a rock band. Music has always formed an important part of our family’s life. And now, music is helping us again, through songs that, in a special, privileged way, make it possible to express pent up feelings. So the idea was formed to join forces on this road of ours through music, giving rise to “The Walk On Project”, a non-profit association named after the first song Mikel composed—“Walk On”, expressing something of what he’s felt during these months since Jontxu was first diagnosed. The song and the project are a battle cry, a declaration of unconditional commitment, of optimism born of intense pain, of commitment to live and enjoy life through the small things, step by unfaultering step… The song expresses the values of the Project.

Mentxu and Mikel (Jontxu’s parents)