Help Mario and Medeea Triumph Over SPG56

We are Madalina and Vlad Voinea, parents to three incredible children - David, Mario, and Medeea. Our family has faced trials that we never could have anticipated, and we're reaching out to you with heavy hearts and a glimmer of hope.

Our eldest son, David, battled acute lymphoblastic leukemia with unwavering strength, and today, he stands as a resilient survivor. However, our journey took an unexpected turn when Mario, at just 11 months old, was diagnosed with paraplegic spastic hereditary type 56 (SPG56). As if fate had another cruel card to deal, our youngest, Medeea, was also diagnosed with the same condition.

The disease:

SPG56, a rare neurodegenerative disorder, has thrust our family into a world of uncertainty. Mario and Medeea, our precious little ones, are fighting a daily battle against a condition that has robbed them of their motor skills. They can't sit, speak, or walk on their own, and witnessing their struggle is a pain no parent should endure.

The disease progresses relentlessly, affecting the nerve cells responsible for controlling voluntary muscle movement. As a result, Mario and Medeea face a life limited by physical disabilities, and the emotional toll on our family is immeasurable.

Current Treatment:

We've devoted ourselves to finding the best possible care for Mario and Medeea. These therapies aim to slow down the progression of the disease and improve their quality of life. However, none of the acquisitions they make through huge efforts can be guaranteed and could be lost at any time. Also, the financial strain on our family is immense, with monthly therapy costs reaching up to 5,000 euros per month.

A Ray of Hope from Australia:

Amidst the darkness, a ray of hope shines from Australia. There, groundbreaking research and trials are underway for a gene therapy specifically designed to combat SPG56. This revolutionary treatment aims to address the root cause of the disorder, potentially halting its progression and even restoring lost motor functions. However, this hope comes with a hefty price tag of 600,000 euros per child.

What the Cure Will Do:

The gene therapy we are racing against time to access holds the potential to halt the progression of SPG56. By addressing the root cause at a genetic level, this treatment could not only stop further deterioration but also reverse the effects already inflicted. Imagine a world where Mario and Medeea can walk, run, and embrace life without the heavy burden of SPG56 weighing them down.

The Urgency:

We have fought relentlessly, seeking treatments and therapies to give our children a chance at a normal life. Now, we stand at a crucial juncture. The treatments are scheduled for September, and the cost is staggering – €1.2 million for both children.

With September looming, we have little time left. We are reaching out to you, our extended family, friends, and compassionate souls, to join us in this race against time. We believe in the kindness of strangers and the collective power of humanity.

Our Plea:

With September looming, we have little time left.We are reaching out to you, our extended family, friends, and compassionate souls, to join us in this race against time. We believe in the kindness of strangers and the collective power of humanity.

We've been resilient, but we can't face this battle alone. Mario and Medeea need your help to access the life-changing gene therapy that promises to be their ticket to a brighter future.

Vlad, Madalina, David, Mario, and Medeea - we're a family desperately trying to keep hope alive. Your contribution, no matter the size, will not only help cover the costs of their ongoing therapies but will also play a pivotal role in making the gene therapy a reality for our children.

Your Impact:

Your compassion and generosity will make a huge difference in the lives of Mario and Medeea, giving them their life back and saving them from debilitating paraplegia.

As parents, we've seen our children endure more than any child should. Your support means the world to us and to Mario and Medeea. Please, share our story, donate what you can, and stand with us in the fight against SPG56. Together, we can be the beacon of hope our children need!