A smile doesn't show what Tatiana and her family endure every day. Tatiana has a rare disease and is totally dependent. Monthly expenses with therapies are around €500. Not having this value means losing what you have already acquired
Imagine a 9 year old blonde girl. With eyes so light you can't even tell what color they are. A contagious smile that will be her best way of communicating with her parents and siblings... because, among other difficulties, Tatiana doesn't speak. Carrier of a rare disease, with a disability of 95%, Tatiana is totally dependent for the routines of everyday life. Monthly expenses with therapies and consumables are around 500 euros and not supporting this amount means that Tatiana may be left without what she has already acquired and become increasingly isolated from her family. In fact, one of the fears is that he will stop walking if he doesn't continue with the therapies. We don't want that to happen. We want to give Tatiana, siblings and parents at least one more peaceful year.
Tatiana has been diagnosed with Rett Syndrome. This Syndrome is a genetic disease, which brings with it a series of other diseases, such as autism, epilepsy, cerebral palsy, non-verbality, they lose skills throughout their lives, they have changes in sleep and body weight, loss of ability to use of hands with purpose, loss of gait, anxiety disorders, heart and breathing problems, Parkinson's among many others.
She is totally dependent for the routines of everyday life, having severe motor complications that compromise walking, sphincter control, chewing, breathing, swallowing, among many others. In order to maintain her quality of life, Tatiana has to have several Therapies that allow her to maintain her quality of life and prevent her from losing the skills she has acquired so far.
The therapies that Tatiana must maintain are:
*PHYSIOTHERAPY TWICE A WEEK – PHYSIOZEN PÊRO PINHEIRO (Nadine Silva, Tatiana's physiotherapist since 2015) , Monthly fee: €120
*OCCUPATIONAL THERAPY 1 TIME A WEEK – At APERSIM in Mafra
*HYPOTHERAPY 1 TIME A WEEK from the age of 3 – Currently at the Picadeiro Arena Lusitana Monthly Price: 110€
*SWIMMING 1 TIME A WEEK in Ericeira municipal swimming pools Monthly Fee: 12€
*PSYCHOMOTRICITY IN THE WATER ENVIRONMENT 1 TIME A WEEK at Associação Dom Maior, in Lisbon Monthly Fee: 140€
Apart from the therapies available at APERSIM, which are facilitated by the Ministry of Education, the family has to support the rest monetarily, which implies a very demanding monthly effort
We can provide copies of the invoices for the different interventions, if necessary.
It is also necessary to acquire 2 pairs of orthopedic shoes annually – Winter and Summer, which give you the stability and rigidity necessary to guarantee the maintenance of a quality gait, without aggravating shortenings and scoliosis for as long as possible.
The regular transport chair is no longer serving, given that Tatiana is growing up, and therefore we are in the process of acquiring a new one, adapted for teenagers/adults. These are chairs that have very high costs (between €3500 and €6000).