Royal Family Care
Iker Aulestia, Maialen's father: "She is proud to be over two years old".
Maialen Aulestia is an 11-year-old Basque girl who has exceeded her life expectancy by nine years. The little girl suffers from a rare disease called Donohue syndrome, a genetic disorder related to insulin resistance that causes growth problems and a life expectancy of no more than two years. Ainhoa and Iker, her parents, found great support from the Royal Son Bou team four years ago during a family holiday in Menorca. This year, the support is even more explicit, as they have been awarded the Family Grant.
How did you receive the news that you had been awarded the Family Grant 2021?
Our relationship with the Royal Son Bou goes back a long way. Specifically, for about four years, when we went on holiday to Menorca for the first time and stayed there. Maialen's happiness and sympathy reached the hotel's management through the staff, to whom she told them in a completely open and honest way about her condition because, although it is not a cognitive problem, the physical affectation is evident. From the moment they met her, they wanted to help us, refunding the cost of our stay, which helped us to return the following year. There have been other gestures in Maialen's favour. And the fact that we now have the grant, apart from being very happy, is a relief for us to pay for the plane tickets next January to travel to the United States, where Maialen is receiving experimental treatment.
You said that the condition is physical, what does Donohue Syndrome involve?
Donohue syndrome is a rare disease of which there are very few studied cases, about 50 in history. Until recently, Maialen was the only case in Europe out of three in the world. Now there is another girl from Alicante diagnosed with Donohue. We were notified just a week before her first birthday, and we were told that she would live to be two years old at the most. And that there was nothing to be done. But Ainhoa, her mother, who is a born fighter, resisted this fate and began to look for professionals who knew something about this disease. That is how we met a medical team from the National Institute of Health hospital in Washington, which is a federal institution. There they carry out experimental treatments to find new cures. We contacted them and they were immediately interested in her. We sent all the medical data to be able to treat her in a trial with a hormone called Leptin, which, although it is not a curative treatment, could give her quality of life. The first time we travelled to the United States, Maialen was 6 years old, and that was when they confirmed that she could enter the trial. The last time we were due to go was in March 2020, but we couldn't because of the pandemic. We resumed the visits this summer, at an ideal time because Maialen's health had deteriorated.
What are the financial implications of participating in this experimental treatment?
Fortunately, the treatment itself, which is Leptin, is provided by the National Institute of Health in exchange for Maialen's medical data. I say fortunately because it is a drug that costs 200,000 euros a year. But we have other expenses. The most expensive are the trips to the United States. Maialen's ticket is also paid for by the National Institute of Health, but mine and Ainhoa's are not. In addition, we have other expenses, such as a walking aid. Because, although Maialen walks without any problems, she has hardly developed any muscle and mobility is difficult for her.
How does Mailaen live her daily life, knowing that she has this syndrome?
She is very aware of everything that happens to her, and we have never hidden anything from her. In fact, she is a very open child and we have managed to make her proud of the fact that she is over two years old. In addition to being quite cheerful, her illness does not mean that she is mentally retarded, so she goes to school and is in her sixth year of primary school. She speaks Spanish and Basque, as well as studying English, and plays the piano and violin very well. But the physical affectation means that she grows little, barely puts on weight and does not generate muscle. She has neither the strength nor the agility of a child his age. In addition, she has a lot of internal problems, because her organs are very damaged due to the excess of insulin. But they stimulate her a lot through physiotherapy, and at the age of three we managed to get her to start walking. She has overcome many of the bad stages that were predicted for her.
As for the treatment, in the mornings we have to inject her with a concentrated insulin that they give us in the United States, and at night I give her Leptin. In addition, she has to take pills and follow a very strict diet. It's a daily struggle, but one that we keep up thanks to gestures like this Family Grant.
What will you use the grant for?
It will be a great help to pay for our tickets next January, when we will have to return to the United States. As the medical data is being monitored, we are waiting to see if we can finally postpone the visit to the summer of 2023. That would mean that the last visit, the one we made last July, has had an effect and Maialen has improved. We will see if we can celebrate her 12th birthday, which is on 27 January, with this news, which would be a great joy.