Alice is a five-year-old girl battling Rett’s Syndrome. Tomorrow’s Glitter Ball and a generous donation from José Afonso, who runs the BP garages in Lagos, meant TACT gave 5,500€ for Alice to have the vital treatments she needs to improve her quality of life.
As a result, Alice is now having private physiotherapy, speech therapy and occupational therapy three times a week in a specialised centre for neuropathologies in Lagos. Her mother Salomé Santos tells us that her progress is astonishing and, thanks to the money raised, she can continue these therapies, which are of so much benefit to her.
Alice has also adapted well to a new school, where she also has therapy. Salomé Santos told me, “The overall impact has been great for her, and she is responding amazingly to the stimulus. She will soon be seen by a cardiologist, a neurologist and a gastro to keep track of any impact Rett’s might be having on her organs.”
Boavista Golf & Spa also stepped in to provide access to their indoor swimming pool facilities for Alice to use for swimming lessons and aqua therapy.
When I chatted to Salomé at the ball, she was feeling incredibly helpless as the hope of a cure or a treatment to keep sufferers’ decline at bay was non-existent. This year, news in the scientific field is more promising.
The first-ever medicine for Rett’s is being approved for sale in the US. It will still probably be a while before we see it available in Europe and the drug could be prohibitively expensive, but it is still a source of hope for the anxious mother. Although it is not a cure, it’s meant to dramatically improve the quality of life of Rett’s sufferers, who are mainly female. Genetic therapy trials are also set to start this year in the US.
Salome says, “This is super exciting news all around, bringing even more power to Alice’s fight to keep strong and healthy!”
Find out more about Alice and the Tomorrow Algarve Charity Trust