Emilio Riera, father of a wonderful boy: "Jaume won't be "healed", but we can make his life better"

Jaume is 4 years old. And from the very moment he was born, on 15 May 2017, they had to help him survive. This little fighter suffers from Congenital Epiphyseal Spondyloepiphyseal Dysplasia, a genetic alteration that affects his physical development and interferes with several vital systems, such as breathing. His parents, Emilio and Marga, and his sister Lídia, are very happy to be able to count on the Family Grant. In February Jaume is due to go into the operating theatre for an operation, and the money from this grant will help pay for a treatment that is not covered by Social Security. Emilio tells us a little more about this joy and Jaume's day to day life.

How did you receive the news that you had been awarded the Family 2021 Grant?

We didn't think it would be our turn, but the hope is always there. We are really very happy because, financially, we will do very well. Our struggle, apart from Jaume's health problems, which is the main thing, is economic and logistical. We have a lot of expenses derived from his needs. And since Marga stopped working to take care of Jaume, we live only on my salary, and we are a family of four, because there is also the older sister, Lídia.

What does the care that Jaume needs mean in financial terms?

It is a huge effort, because there are things that are not easy to manage. To give an example, every time we have to go to Palma for any kind of check-up or intervention - and we go frequently - the Social Security only covers travel for Jaume and one companion. However, we often have to go all three of us, because he needs to travel with machinery to be able to breathe, as well as the pram - hopefully in a wheelchair soon - and the suitcases. So we have to take the car or the three of us go on the plane. One person can't do it all. Also, for me, it means I have to take my holidays for these trips. We have to combine financially, but also humanly.

How did you come up with the idea of presenting Jaume's case to the Family Grant?

We found out about the Family Grant project through Marga's sister, Ague. She works in the kitchen at the Royal Son Bou, and was the one who told us about this grant. The story is curious, because as a result of a photo we posted on Instagram, the director of the Royal Son Bou became interested in Jaume's case, and we were encouraged to present his case in order to be eligible for the grant.

What will you use the grant for?

The main priority, and what we will probably need the full amount of the grant for, is orthodontics, which is not covered by the Social Security. The last operation he underwent was a mandibular extraction, which is basically putting Jaume's jaw back in place to improve his breathing and ability to eat. It was a relatively simple operation that went well. But because of Jaume's breathing difficulties, it kept him in hospital for weeks, intubated. As a complement to this operation, they now have to enlarge his palate so that he can close his mouth properly. And this is something that is not paid for by the Social Security, so we have to go to a private centre. Next, we hope, will be an adapted wheelchair for him. Jaume is already four years old, so he will soon stop using a pushchair. With an adapted wheelchair, he could have much more autonomy and be free to move around on his own. We also have in mind to adapt the bathroom so that he can do his own needs. Right now, at the age of four, he realises everything he can't do. Actions as normal as turning on a light, which he can't reach, he starts to question them. Or the simple fact of asking why he can't go to the park to play with other children. That part is also very hard.

How do you envisage your child's future?

We know that Jaume will never be "healed" because it is a genetic condition. But we can improve his quality of life with palliative care. There are very few cases like him, which we know about through the association Asociación de Familiares y Afectados por el Sindrome de Stickler, SEDC (Displasia Espondiloepifisiaria congénita) and other Type II collagenopathies, derived from a mutation in the COL2A1 gene -AFASCOL-. We have known cases of people who are already adults. Cognitively they are children without problems and their life expectancy is like that of any other person. The problem is the physical affectation, which conditions other faculties, such as breathing. In Jaume's case, as soon as he was born, he had to be put on life support in order to live. His visits to Son Espases are so frequent that he has even made friends with the medical staff. The way both Jaume and we treat them, we already consider them as family. We hope that by the summer we will be able to celebrate the success of the next operations, especially the one on the palate, which is immediate.