September 9th 2017 was the day our world changed forever. Our beautiful son Jacobi, who was only 4, was diagnosed with Duchenne Muscular Dystrophy (DMD).

For those of you who do not know about this condition, DMD is a severe muscle wasting disease caused by the lack of a protein called dystrophin. Over time, the muscles in a boy affected by DMD, will gradually degenerate, resulting in the loss of ability to walk and the need for a wheelchair from ages of 8 to 13. This cruel disease also reduces life expectancy and at present, there is no cure.

In the aftermath of Jacobi’s diagnosis we felt lost, alone and without hope. As a family we have now gained in strength and feel a strong need to be proactive. We want to make a difference to Jacobi’s life and to all other little boys affected by DMD and for this reason we made the decision to start fundraising.

Our mission is to raise money to fund research and clinical trials in order to find a cure for this cruel disease. Over the last few years, significant advances have been made and we along with other parents feel that there is hope on the horizon.

The Jacobi’s Wish Trust has been formed to join with Duchenne UK’s mission to ‘End Duchenne in Ten.’ We aim to keep you informed about Jacobi and the fundraising events we have planned throughout the year.