Mimi and Sara, a special needs love between two equal sisters

Five years ago, Mimi was born with a chromosome 1 Q43Q44 deletion. It is a rare disease that affects 500 people in the world and she is the only one in Ceuta who suffers from it. Almost four years ago, Sarah, her perfect complement, arrived to save each other’s lives. The little sister shows sensitivity and attention to her big sister, something so rare as the big sister wants to learn how to do what she sees from her little sister. Despite all this means, Hassan and Lahib are clear: “we have two daughters, so we don’t envy anyone”

Every September 5th World Siblings Day. To mark it, Full inclusion publishes a series of resources for siblings of people with disabilities. From El Foro de Ceuta, we wanted to do it by telling the story of two sisters: mimi and sarah.

Lahib She was four months pregnant when she found out that Mariam, her eldest daughter, was coming with a strange disease it would condition his whole life, a chromosome 1 deletion Q43Q44. It is a syndrome characterized by several symptoms, one of which is lack of muscle strength as well as slow psychomotor development. When he found out, he swallowed his way and along with HassanThey moved on, not knowing what awaited them. “I decided not to sacrifice myself, but to experience what I had to experience with a lot of love. It’s very difficult, but you have to mentalize yourself, I was lucky enough to know what I was going to have and I prepared a lot mentally”, says the mother of the two girls. There are only 500 like her in the world and 13 of them in Spain. It is the only one in Ceuta. there are mimes five years and it’s a girl very affectionate and hardworking. He arrived, as his mother says, “to cross the boundaries of love”. she is also a girl totally dependentWhat do you need? help with eating, washing and for any daily activity. Receive sessions from physiotherapy Y speech therapyin addition to any facilities provided at your special training centre.

What change for Mimi, Sarah’s arrival was just now 19 months later: “It was the greatest gift we could give her and ourselves, Sara is the engine that made Mariam change her way of being.” The youngest is still gone not even 4 years old and is already a very important pillar in developing and in stimulation to her older sister. They are a single pack and consider separation only when they have to go to different educational centers. “A child who gets love and attention goes a long way”says Lahib, highlighting the added boost in early care with Sarah’s arrival.

It took Mariam two years to learn to crawl, now she wants to start walking and even jumping. She only needed to see her little sister go through this phase to give her up. “What she does is observe, practice and donow having Sarah was a blessing to all of us wants to stand up to see everything at the height of his sister and asks for it through gestures». Despite everything that this marriage has been through, he assures that he has survived several daughters, so as not to envy anyone. But it’s not just Mimi who shows her desire to want to do everything like her sister. The baby girl begins to develop a sensitivity it’s not typical of their age, but only those who grow up with someone with special needs can have it. He is always aware of Mimi, if she drops the bottle he helps her, if she wants to dance, he holds out his hands, they even protect themselves by swimming and have a great time. “My house smells like love”, claims the mother, who warns they won’t stop until they get everything. Mimi does not speak, but pronounces vowels, so Sarah has learned her language to communicate with her. However, wanting to be able to talk to her sister makes her sometimes even talk to the dolls. Equality is another of the most important family values. When you buy something for one girl, you buy something for the other girl. In this way, Mimi learns to have fun like everyone else, and Sarah learns to see that both have the same rights.

One of the problems she finds in Ceuta is lack of activities and centers for children with special needs. Not even adapted playgrounds. “In the afternoons Sarah has a lot of activities besides school, but with Mariam I have a lot of problems to enroll her in school. horseback ridingin ICDetc., I can’t point it to anything but physiotherapy, speech therapy and psychomotoricsand all private,” he decries, adding the money his daughter needs to have better quality of life. Accurately obtaining a a walker to help Mariam pass exceeds an expense of two thousand euros, which not all families can afford.

Sarah He also wanted to participate in this interview via audio recording stating this he loves his sister very much and that he cares a lot for her because she is his sister. In short, a family in which adversity have served to multiply the lovehis biggest religion who practice through care. Also from a critical point of view, claiming inequalities to achieve a better world for both.

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