Alice is only five-years-old but she is bravely battling a rare disease called Rett Syndrome. She needs support that is beyond what her mother can provide.
Her mother, Salomé Santos, explains “Alice was desired and loved from the moment I knew she was coming. She was born healthy, strong, and perfect, until around 18 months when our life turned into a nightmare. Once a lively and energetic girl, with totally normal development for her age, Alice started changing overnight. She stopped talking, playing, using her hands, responding to stimuli, and started new behaviour patterns of constant yelling and twirling. I reached out for medical help then and Alice started being seen by a medical team in Algarve, where we live. Her regression continued at a fast and violent speed, but we didn’t have a diagnosis.”
In the meantime, the world was experiencing the first wave of the COVID19 pandemic, and the Portuguese healthcare system was backed up, and every diagnosis or information arriving was indefinite and late. After several consultations with specialists from different areas (and always far from home) the nightmare started taking shape. Alice was diagnosed with Rett Syndrome.
Alice also went through a genetic test in 2021, to confirm the genetic mutation of the MECP2 gene responsible for Rett Syndrome. The results took one year to become available.
Rett Syndrome is a terrible and rare genetic disorder that affects primarily females and is incurable. The type of medical support that Alice will need for the rest of her life is only possible through the private healthcare system, both for specialist doctors and therapies. In order for Alice to maintain the motor and social skills she still has, she will need weekly sessions of physiotherapy, speech therapy and occupational therapy, summing to a total of 1200€ per month. Other medical bills run around an additional 1000€ per month.
Salomé works full-time and is also Alice’s primary caretaker. Her parents help with housing and some of the logistics of taking care of Alice so she can work. She receives some financial support from the Portuguese government and some minimal financial support from Alice’s father. However, both combined don’t even cover one-third of Alice’s health bills.
“Asking for help is always hard, but Alice needs all the help and support to keep fighting. Alice doesn’t speak, but she feels everything. She has the sweetest smile in the world, she is precious, and she deserves to have access to everything available to allow her to live the best life possible. Please help me help Alice.”
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