Last year, the Down’s Syndrome Association (DSA) was contacted by Rotherham Organisation for Down Syndrome (RODS) as one of their members, who was from Albania, was being threatened with deportation.
Arben and his family had come to the UK from Albania following threats to their lives after their son Amar was born with Down’s syndrome. Although they were trying to settle in the UK and gain refugee status, they were later told they would be deported.
The DSA, along with RODS, Down Syndrome International (DSi) and the Jonathan Centre in Albania, wrote letters of support for the family’s appeal and sent them to the Home Office. The Jonathan Centre confirmed that there are many areas in the country where blood feud laws are still followed, and therefore it could be a dangerous place for the family to return to. After months of uncertainly, Arben and his family were finally told that they could stay in the UK just before Christmas.
‘We are delighted that we could help Arben and his family gain legal status to remain in the UK. The thought of sending them back to a country where they were under threat is absolutely unthinkable. Working with our colleagues at Down Syndrome International and the Jonathan Centre in Albania, we were able to coordinate a compelling case for the Home Office. We wish Arben, Amar and the whole family a happy and healthy life here in the UK’.
Carol Boys, Chief Executive, Down’s Syndrome Association
Here is Arben’s story in his own words…
We used to live in a small village in Albania, a place where the opinion of people around has a great impact in our life. The moment that Amar came to life we weren’t initially informed that he had Down’s syndrome, it was just the doctor’s allusion. To be sincere, at first, we were shocked because we didn’t know what Down’s syndrome was and we started researching how can we adapt to it. We researched what he would need and how to help children with Down’s syndrome.
Unfortunately, my father didn’t accept the fact that our baby had Down’s syndrome and the situation escalated. Albania is a country with a low economic level, corruption and people do not think with sound logic. My father and all my cousins didn’t accept Amar anymore and my family, so we were discriminated.
At the same day Amar has born 11.02.2018, we sent the blood for analysis. After 21 days of anxiety and debates at home, the results arrived and stated Amar had Down’s syndrome.
This aggravated the situation with my family. We had discussions and debates but there was total ignorance from them. They weren’t accepting Amar and we couldn’t agree, and they couldn’t accept this situation. For my wife and me, it was an extremely bad time. To help my son and my wife we decided to leave Albania, leaving behind everything we have built up in our life, it was very difficult for us.
I am happy now that my family is safe. We felt obliged to leave and save our lives. It was a long way, we made sacrifices, and there was lots of stress, as you cannot imagine.
We were just like a small boat in the endless ocean with a big storm around us. Finally, we arrived in UK to search for something for my family that my country couldn’t give. Here, it was just like fighting yourself, struggling to accommodate and adapt to everything. The language, the place, the way of living. My wife went through depression and panic attacks from the situation. We were kept moving by hope and love, and we removed everything when we saw that finally we are here, and Amar is with us and free.
Amar is growing up and every day he does something new which means everything to us. Amar is the motive of our family happiness.
Who was with us in our application for Asylum Seeker
We applied for asylum and waited for a long period of time. We didn’t know the language and it was very hard to communicate. A few months later the Doncaster Conversation Club offered us a meeting with a wonderful family who have an amazing boy called Stanley, he also has Down’s syndrome. Even though our English was very weak, Sara (Stanley’s mum) was never tired with us. A woman with a great heart, she listened to every problem of mine, she taught me things that I didn’t know, supported me every step. She offered me what I was missing for a long time. She connected us with council support and Rotherham Organisation for Down’s Syndrome (RODS). After two to three weeks, she told our story to the RODS and Sara Smith (New Parent Representative), and Gloria Brookes (Secretary of RODS), who brought us toys and groceries which meant a lot to my family. Sara and RODS supported us a lot and we understood that we are not alone. RODS is an association with a big heart. RODS has wonderful families and I thank them a lot. RODS invited me on lots of events that supported me on every step of mine. I want to thank Sara Smith, Gloria Brookes and all the big family of RODS for the support and the love they gave us in our hardest times.
In August 2020 we got a refusal from the Home Office but with the right of appeal. We had to file an appeal and wait for a trial date. We were shocked. RODS expressed their support and Sara and Gloria assured us that they would take part on the trial as well. They asked for the support the Down’s Syndrome Association, Down Syndrome International and the Jonathan Centre in Albania. They have written a letter which gave us the biggest support we ever had. All these people gathered together to show me that I am not alone.
I don’t know if I’m ever able to pay them back for the things they have done for me. I know that I am very lucky to have met such special people that gave me opportunities to live.
Granted permission to stay in the UK
The news that we were finally granted permission to stay in the UK was unexpected and very joyful for us. It honestly still seems like a dream.
Now as a family we have lots of work to do. There are many unknown things in front of us but we hope that we will integrate and be like any other regular family in every aspect. Getting the status makes you feel secure. I hope that soon I find a job as construction engineer as I have graduated for this profession.
Amar was born in Albania and he is almost three years old. He has a sister, Abigena and she is 11 years old and a brother, Argis who is seven years old. Amar will soon have another brother who is due April. He is caring and he plays a lot with his siblings. He loves them and wants to stay close to them. When Amar was born, he had two small holes in the heart and kidney problems. But with time his body has recovered these problems without the need for surgery.
Amar was almost two years old when he started walking and a few months ago he started to stammer some words which are: ba, ma, Aba, dada. He loves nature and loves walking at the park but he doesn’t like to speak, write or draw just yet.
He is a very active and bracing child. He has made good progress since he started to go to nursery. He loves playing with cars, building with cubes, dancing and watching TV. He feels very secure and finds a way to get the things he wants.
The family’s future in the UK
We hope that we have a healthy family with a priority to educate our children and integrate our family in society. I hope to soon start working on my profession.
Amar’s future in the UK
As parents we hope that Amar has the best in life. We feel good now and we hope Amar will never hear about the discrimination people had directed towards him. We wish for him to be able talk properly, speak, continue with the school and hope that one day we will see him go to college.
We believe that, in the future, Amar will be one of the strongest voices to say ‘we are the same as you.’
Thank you for your time.