A message from their mother:
People of goodwill, we reach out to you for help. We are Marchela and Adrian Sava, parents of three children: Adina - 16 years old, Gabriela - 10 years old, and Maxim - 3 years old. Unfortunately, two of our children, Gabriela and Maxim, inherited a very rare genetic condition known as Hereditary Spastic Paraplegia type 56 (SPG 56). This neurodegenerative disease affects nerve cells responsible for voluntary movement, preventing the children from sitting, playing, or walking—activities typical for their age.
Since it is a rare condition, there is no specific treatment available to stop it, only daily rehabilitation and prayers. Hope has come from Australia, where a special gene therapy for SPG 56 has been developed, targeting the root cause of the disease. It offers a chance to halt its progression and possibly restore lost motor functions.
Unfortunately, the cost of treatment is enormous—€600,000 per child, meaning we need €1,200,000 for both, a sum that far exceeds our financial capabilities. We desperately seek your support to raise the necessary funds for the vital treatment Gabriela and Maxim so urgently need. Help us give them the freedom to run towards the sunshine, hand in hand, and experience the magic of childhood. Any donated sum will be a huge help to us.
Every gesture counts and can bring a ray of hope into the lives of our wonderful children. We are deeply grateful for your support and for being with us on this challenging journey!
With gratitude,
The parents, Marchela and Adrian.
