A group from La Cala de Mijas Lions Club this week visited the family of baby Carmen Leyre, aged 15 months, at her home in Riviera. Carmen was born very prematurely and suffers from an extremely rare condition, nemaline myopathy, which affects the muscles and the respiratory tract. There are only 28 such cases recorded in Spain.
The family is given limited support; they have been provided with the breathing machine to which she is permanently connected and without which she is unable to survive - but baby Carmen's needs are multiple. The damage is severe and her parents need to provide substantial extra support.
The local Lions have stepped in and purchased a special seat and stand which will allow Carmen to sit up: it can be placed on the stand which allows it to be used at floor level or on a chair or sofa. It can also be converted into a car seat.
The Lions have also paid for six months of special pulmonary physiotherapy.
Family, neighbours and friends are doing all they can and they have set up the Asociación Carmen Leyre which can be found on Facebook.