Gladys Sanchez with her twin sons Rodrigo and Claudio, who suffer from a rare genetic disease.
By Sarah Schwager
A LYNBROOK mother is desperately seeking help to give her twin sons, born with a rare progressive genetic disease, the quality of life they deserve.
Gladys Sanchez has never complained in 15 years of caring for her sons Rodrigo and Claudio, who suffer from centro nuclear myopathy, which causes them to have very poor muscle tone – not even to her family, who live in Chile.
However, Ms Sanchez has now decided to speak out to get her 15-year-old twin sons and herself out of the house in which they are bound and out of their deep depression and loneliness.
Claudio and Rodrigo totally depend on their mother and sole carer to help them with all their basic needs.
“Lately my sons’ condition has deteriorated rapidly,” Ms Sanchez said.
“In addition to the illness there are added complications such as neuromuscular scoliosis, problems with breathing, chewing and swallowing their food, and extreme fatigue.”
The boys no longer have the strength or muscle tone to walk and are dependent upon their electric wheelchairs for mobility.
Because of this, they can no longer attend school or even leave the house.
The most basic needs such as shopping are a challenge, as the family cannot afford a vehicle that can accommodate two wheelchairs.
High school is also out of the question as there is no government funding to provide carers for the boys, and funding from charitable organisations is limited, and so Ms Sanchez must hire a private tutor to visit their home twice a week.
“The funding just isn’t available and as such it is my responsibility to raise the funds myself,” she said.
However, as the sole carer of the boys she is unable to leave them alone even for a few hours and therefore cannot work.
Ms Sanchez moved to Australia 18 years ago with her husband.
The family lived in Springvale, and Claudio and Rodrigo attended primary school in Springvale until grade six.
However, when Ms Sanchez and her husband separated, she was estranged from her church, her friends and her husband’s relatives, and so moved to Lynbrook.
The three now have almost no contact with the outside world, apart from the boys’ tutor and therapists and when their father occasionally visits, however they have no knowledge of his other life or where he lives.
Ms Sanchez said all she wanted was for her sons to have a better quality of life.
“Their quality of life isn’t good. They have nothing to do, they can’t enjoy themselves,” she said.
“They are always here at home. They can’t go out.”
Ms Sanchez said doctors could not say how long her sons were expected to live, and much would depend on whether they underwent an operation on their spines.
“We are almost housebound and the simple but essential pleasures such as window shopping, going to the movies, the beach, the football, and meeting people socially are beyond our reach,” she said.
“Attending medical appointments is incredibly frustrating and humiliating.
“Claudio and Rodrigo are special. They are the source of my pride.
“They are my friends through good times and bad.
“They are very intelligent, have a happy disposition and despite all they have to go through they focus on the positives and live for the day.
“And they need your help in order to move forward with their lives.”
Anyone who wants more information can contact the News on 5945 0666.
