Within my circle of friends, I have several mothers of children with rare diseases. It is no coincidence that this is the case, as I have a daughter who is deaf from a malpractice when she was 9 months old. I will tell you about her another day because I do have some stories to tell about that. But this week I would like to tell you about a Super mum I know.
Maria Nystedt, is originally from Finland, but has lived most of her life in other places. She’s got a Finnish passport; her mother tongue is Swedish and she now lives in Majorca almost 9 years. She is lucky to call 3 different countries her home. Maria lives in Majorca, in the countryside together with her husband Magnus and 2 children, Maximilian 14 years old and Adrian 11 years old and a dog, a cat and some ducks and chickens. Her day-to-day job is as a consultant and project manager for a Spa and Wellness. She has made projects all around the world and currently she is working on 2 projects in Asia. She enjoys travelling the world, be out in nature and she enjoys to talk about her passion’s which are food, writing, riding and hotels.
Up to there everything sounds like a dream come true in sunny Mallorca but the reason why the couple decided to move to Spain in the first place was because Maria and Magnus’s youngest son was born with a very rare chronic anaemia that means he is dependent on blood transfusions.
“We groped in uncertainty for two years before a diagnosis could be made and we finally knew what to do,” says Maria. The couple tried all different kind of ways to get the help that they needed and found an organisation in Barcelona that investigate rare blood diseases. One of the co-operators was the Dutch doctor who managed to come with the final diagnose. “At this point we felt that we had an entry point to healthcare in Spain. There is generally more anaemia in southern Europe so there is a wider experience here,” says Maria.
She wrote a book about the experience the family had during the first years of Adrian’s life to try to help families in similar circumstances. “I wanted to write a book that I had missed all these years. A book that supports and addresses everything around the disease itself. How do you cope and how do you get up and start believing in life again?”
“When your child falls ill, your life is in chaos. You look for solutions, you grope for hope, you feel resignation. But as a parent, you steel yourself because you have no choice. I’ve been there. I thought our time was up, that we would never be able to be away from home, travel or work again. I’ve been inconsolable, terrified, and groping for help for my son. I have travelled across the globe trying to find a cure. I’m still scared and sometimes I wonder how I’ll cope, but the doubts and desperation are taking up less space today. Unfortunately, the book is not translated into English yet, I often get that question so maybe it’s about time,” she says.
She is grateful to the health service they have received here for their son. “Adrian gets all his treatments and care in the public hospital system and at Son Espases. What I particularly appreciate here is that they always do that extra check-up without hesitation and don’t postpone things. If there is a concern about something, they rather do an extra check-up as soon as possible instead of waiting. In general, I feel there is a short waiting time to get to a specialist from the moment the doctor decides it’s time for example to check the heart or do an extra ultrasound. Here in Mallorca we have many doctors who check-up and follow Adrian, including the ones in the children’s haematology department, as well as other specialists, so we see many different doctors whereas in Sweden we more or less had one doctor who was the main point of contact. I think both has its pros and cons. Another thing that is different here and what I really appreciate here is that Adrian has had the same nurses since we moved here so we know them well and they know us and they have seen Adrian, at least every 3 weeks, ever since he was 2 years old, whereas in Sweden there was a bigger turnover of staff.”
In Mallorca the campaigns to give blood are constant as the resources are limited on the island. Maria gives blood herself and always encourages people to sign up and give blood. It is very easy and does not take long time, the only thing that changed during the pandemic is that now you call to make an appointment for giving blood. “I hope more people will sign up,” she says.
What was the best that happened to you since you moved here?
“Many good things have happened since we moved here. We have our own house in the countryside that we love, we have in the last year a new beautiful family member, our dog Nala that we got from the stables where I go riding in Manacor. The sweetest and kindest little dog. Apart from that I think the best things are that we can be outside so much, all year around. I love hiking in the winter and one of the best things I know is to ride and gallop along the beaches here. I also love all those warm and sunny days that suddenly can appear even if its winter. Having a lunch outside in the sun in February – makes me always think – how lucky I am.
What are you looking forward to in the future?
“I look forward seeing my two boys grow up and follow their path in life. I look forward to an advancement in the medical research so Adrian can have a good quality of life also in the future and maybe even be cured one day. I also look forward starting to travel the world again, I really miss that energy you get from discovering new places.”