“We will battle to the end of our days to provide our children with the best possible quality of life” says the President of ARKA

Sometimes life presents us with unexpected surprises that we have to face with love, willpower and a lot of courage. That is the case with the families that form part of ARKA Tapones Solidarios, a non-profit organisation in Mallorca created by the mothers of children suffering with cerebral palsy.

PortBlue Hotel Group has had a very close relationship with the organisation for years thanks to Alejandra Porto, our quality and environment manager, and an ambassador for the partnership and the cause. Alejandra coordinates the collection of plastic lids that can be used to generate financial resources that can improve the quality of life of children and help give visibility to the organisation, to which donations can be made through ARKA Tapones Solidarios.

To learn more about ARKA and its needs, we spoke with its President, Ángela Fernández.

How did Arka get started?

It started as we were looking for a way to be able to cover all of the needs of our children, their treatments, therapies, adaptations and orthopaedic products, among others, which are not fully covered by Social Security or are almost covered but require you to put up the money needed in advance, both whether it’s €250 or €9,000. For example, the latter amount is needed for a wheelchair with a moulded seat, which Social Security will then pay back within a period of 6 months to two years.

How many members do you have at the moment?

We currently have four children, each of them with a different family situation. Alba is the oldest at almost 15 years old, and is cared for by her single mother Teresa, with the help of her sister, Nerea. César is 12 years old and is also cared for just by his mother Dora, who also takes care of her eldest son with 2 granddaughters. Noah is 8 years old and cared for part time by his mother Marga and occasionally by his father Ismael. Finally Julià, my daughter, who I care for myself with the support of my partner Jose. And none of this would be possible without the unconditional help of Xisca Estrany, who acts as secretary and manager of the organisation in her spare time. Xisca is the aunt of Jaume, one of the children who has already died.

If there are other families living through the same experiences as you, how can they become part of the organisation?

There are many more families in the same situation as us, some struggling on their own and others who do not have the energy to fight or prefer not to be seen in public. The world of cerebral palsy in children is becoming more and more visible, but that doesn’t mean that it is not still painful to take a walk with your child down the street and have them stared at as if they were a funfair attraction. Not everyone is ready to fight.

What are the needs you have that are not covered by the authorities?

From the age of 6, the authorities no longer cover therapy, which has to be paid by families. I guess they believe that kids from the age of 6 are all suddenly cured by magic. The more therapy you want to give your child, the greater the bill at the end of the month. Personally I pay about €500 a month just for therapy.

Where did you get the idea of collecting plastic lids?

About 10 years ago, oil was really expensive and recycling plastic became increasingly popular. At that time you could get around €140 per ton of plastic and there was also a lot of awareness due to the publicity that was given to some children and their suffering.

However, we have suffered two very significant blows. Firstly, oil became much cheaper and we began to get only around €70 per ton. And secondly, there was some fraud by families with children who were not seriously affected or who did not even have any illness. They swindled a lot of money and the media coverage it received meant that many people started not to trust us. But that is all a thing of the past, and we continue to fight to meet the needs of our children.

What do you do with the money you raise?

As I mentioned, we use the money to cover the children’s therapy or orthopaedic needs. For example, Julià’s wheelchair and its moulded seat cost €8,300. Social security will cover only €5,500, and I have to cover the other €2,800 personally. If you add this to her monthly therapy expenses, it would be impossible for us to get to the end of the month. In this case, the organization will cover those €2,800.

How can people help the association?

With donations or through Teaming (micro-donations), a page where you can just contribute €1 every month from your account with no additional expenses. This is probably the best option, with each person only having to contribute €1 per month. But if we can manage to get 4,000 people or more to support us, we would have the expenses for our children paid for life.

What do you need as a top priority?

I’m not going to lie to you, we need money. The kids are getting older and their expenses are growing. The four mothers raise our children alone and often on just one salary which doesn’t go very far. For example, I have to change my vehicle (I have a family car, but it’s not adapted). A van will cost me around €24,000, and I then have to adapt it by adding a ramp for another €8,000. And I have to do this on my own, because her father has disappeared from our lives and doesn’t want anything to do with taking care of her. And if we add this to Julià’s monthly expenses, therapy, orthopaedics, food, clothes, the house, etc. we often just don’t have any money and have to turn to the family for help.

Our life is already quite difficult, as every day you get up and have to struggle with inner demons that I would not wish on anyone. I never imagined that being a mother would be like this, and that hurts. Even if you have fully taken it on board, it still hurts you every day. And on top of that you have to add the worries about not having enough money to cover all your child’s needs, whatever the cost, because you always want the best for them, whatever gives them the best quality of life. And that’s why us mothers will be fighting until the end of our days.