Cerebral palsy that hasn't slowed Laura down: "I'm here because I've had access to physiotherapy, speech therapy... and a lot of effort from my parents"

• PILAR PEREZ

  Madrid

• ANGEL NAVARRETE

  Photographs

Updated Sunday,24December2023 - 19:16

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I was born to live life." This is the motto of the Spanish Confederation of Associations for the Care of People with Cerebral Palsy (Aspace). But it could well be one of the phrases etched on Laura's skin. She has two phrases on each arm: "Treat people with kindness" and "Walking in the wind." Both describe it.

He is 23 years old and has never walked. Cerebral palsy appeared in his life in his first moments of life. "I was born prematurely, at six months, and I had a stroke." She has a twin sister who has no sequelae. "My affectation is at the motor level." Laura manipulates her chair with a small joystick to place it in the position requested by the photographer while we do the interview.

She wants to focus on the need for support for the 120,000 people with cerebral palsy living in Spain. "I'm here because I've had access to early stimulation, physiotherapy, speech therapy... With a lot of effort from my parents, my family. Those who can't are doomed not to move forward."

One in 500 people has cerebral palsy. There are a total of 17 million in the world. But not everyone has the same degree of disability. Almost 80% of people with this and similar disabilities have great support needs, either physically, communicationally, or due to a combination of two or more factors. This necessarily leads to the provision of human support 24 hours a day, seven days a week.

Aspace calls for the regulatory development of early care at the state level. This means designating an allocation of sufficient resources, their universality, multidisciplinarity, transversality and free of charge. Alejandra Padilla had Isabella 14 years ago. Complications in childbirth, a cesarean section, led to the fetal suffering of the little girl that resulted in a brain injury that interrupted the future possibilities of development and maturation.

All in all, Alejandra says that "Isabella is privileged." It is because it is the perfect example of what early care from the hospital, in this case the Niño Jesús de Madrid, was able to put in place to make the most of the abilities that remained intact in the little girl. "Today it communicates through the Tobii system [a device that reads the movement of the pupils] at the motor level, it doesn't walk, but it does understand everything." And he smiles. "He's looking at us. He has a thousand ways of doing it and with each one he expresses what he feels." Cognitively, the girl understands everything. "Sometimes, when we argue or get angry, too. It totally changes his face."

Alejandra enjoys her daughter's luck because "there is a waiting list for up to two years for a place in early care for children from zero to six years old." A fact that varies greatly from one community to another. "In the end, it is the parents who manage to go from one place to another, with the help of associations and foundations, to balance everything so that our children can access the social and health services they need. This requires us to be by and for them."

Six years are the key barrier in promoting their neurodevelopment. "Quality health care can change the quality of life and the course of the disease," says Paula Armero Pedreira, a pediatrician at the Laguna Care Center Hospital, in a report published in the journal Comprehensive Pediatrics.

Patricia is the mother of Isabella, a 14-year-old girl with cerebral palsy.

The approach required by these children and future adults differs greatly from one to the other. No two cases are the same. Isabella and Laura are an example. While Laura tells us the details of her story with near-perfect diction, it is Alejandra who gives us the details of Isabella's day-to-day life. "Am I talking too much? Well, sometimes it's hard for me, I get tired and I need to catch my breath. Or I get stuck if I'm nervous," Laura asks us at one point in the conversation with EL MUNDO.

He gesticulates a lot and despite some motor problems in his hands, he also uses them to express himself. "I've worked with a speech therapist since I was little. Every day, I've always been in physiotherapy, which for me is like breathing. It's very important so that the muscles, even if you don't use them as much, don't go numb," says Laura.

In general, all people with cerebral palsy have difficulties with mobility, control, coordination and muscle tone, posture, and balance. Along with this, there are particular circumstances that add up: one in two has an intellectual disability, one in four lacks oral communication, one in three people with cerebral palsy is unable to walk, three in four experience pain, one in four has disruptive behaviors and one in 10 has visual impairment.

In this way, each person with cerebral palsy is unique and unrepeatable, giving rise to a heterogeneity of profiles of people with cerebral palsy. "My grandmother sometimes tells me that I don't remember that I have a chair stuck to my ass," Laura exclaims while laughing out loud. "Now I live in Madrid and I want to stay here. I know that independence comes at a price, but I know I can do it."

Laura takes the subway often and gets around the city in her wheelchair. The price you have to pay is not only to cover rent and other expenses, but also the people (assistants) who have to go to your house to be able to fix it in the mornings and put it to bed at night. "My mother gave up everything for me when I went to university," she laments. His mother became that life assistant. Now he is trying to balance aid from the Community of Madrid and the Dependency Law to cover this need. "Since I've just arrived, I have to register and start the paperwork."

In our country there is a roadmap that includes all these social and health needs. The challenge of the Spanish Disability Strategy 2022-2030 is to recognise early care as a subjective right of all children, guarantee equal access, formulate quality standards in this area and include it in the common portfolio of health and social services, also developed in coordination with education.

"We assume a high physical and emotional cost in the attention and care of our children," says Alejandra. Because when you start listing the expenses on speech therapists, rehabilitators, medical visits... Not all of them are covered by the public health system. And my health," he stresses. From carrying the little girl - at 14 years old she already weighs a lot - she has injured her back. "There are things as simple as being able to have a ramp to adapt the seat for the car that cost 11,000 euros, which we have received from the association."

Entities such as Aspace or the Numen foundation are the ones that provide the necessary support to families with people with cerebral palsy. "Thanks to them, you can apply for help here and there. Because you learn to move, there is no one-stop shop where you can be attended to in a comprehensive way," says Alejandra.

"The life of a family that includes a person with cerebral palsy among its members costs between 250 and 890 euros per week," says the president of the Aspace Confederation, Manuela Muro. In this way, the role that families acquire in the lives of people with cerebral palsy is that of support providers. "Especially in the case of mothers; that in 71% of cases they abandon their professional career to dedicate themselves exclusively to caregiving," says Muro. Here the example is Alejandra.

"The current Dependency Law only covers their needs up to the age of 26. But their situation is not going to change. That's why we're calling for it to be extended until they turn 30," says Isabella's mother. Last summer, a week before the elections, the government increased by decree the amounts of long-term care allowance and home care hours. The truth is that these are minimum figures that must be completed by the autonomous communities. "The zip code does a lot of damage here," says Alejandra.

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Every euro we spend on Isabella's care and education is worth it," Alejandra insists. She explains that they take the little girl to an integration school and have the support of a teacher. "She can follow the classes, she just needs support to be able to access the books. In a normal school there is not always a support figure, here [Numen special education charter school] they are prepared to attend to the different disabilities and that the children can complete their studies."

Laura reminds us that "there must be resources and scholarships so that we can all have the same opportunities". She makes it clear that she doesn't want to be a burden and that little by little she has carved out an independence at the cost of sacrifice. "It has been an exercise in trust for everyone. When I told them as a teenager that I was going to camp, don't see their faces. But I left."

To ensure that Laura is not an exception, the Spanish Association of Paediatrics (AEP) calls for "the adequate management of paralysis, which requires a multidisciplinary approach". As the protocol for diagnosing and approaching ASP explains, "in addition to the different health specialists, it is necessary to coordinate with the Early Care Centres, with schools and professionals in the educational field, always placing the patient and their family at the centre of any therapeutic decision".

Aspace makes it clear that "early care has an obvious impact on the future of children with cerebral palsy". Isabella and Laura's lives bear this out. "It's not an expense, it's an investment; The work that is now carried out with a child will revert to the development of their autonomy, enable their empowerment and guarantee their independent life, both in childhood and in adulthood."

• Neurology