Nine-months pregnant and just days from giving birth, Bushra Al Shams heard the news she did not want to hear. Her nine-month-old firstborn, Sara, had muscular dystrophy – a muscle wasting condition that could also affect her unborn baby. When Ms. Al Shams gave birth to Noor days later and looked into the tiny face of her second daughter, the 29-year-old knew she was born with the same condition. “I just knew it,” says Ms Al Shams, an Emirati. “My heart was heavy. She looked just like her sister did when she was born.”
At exactly nine months, like her sister, it was confirmed Noor had the genetic disorder. This meant that until five months ago, neither could move a single muscle in their bodies nor communicate with their family. But after moving to Amana Healthcare this year, a new Al Ain-based facility that offers specialized intensive care to chronically ill patients outside of a hospital, Sara, 5, and Noor, 4, are, for the first time in their lives, showing signs of communication. Sara can now blink her eyes, wiggle her body and move her hands to gesture – vital tools that allow her to communicate with medical staff about her likes, dislikes, wants and needs.
Noor is also, slowly but surely, following suit. Ms. Shams calls out her elder daughter’s name with a smile. Sara blinks, then slowly winks at her mother. Five months ago she would have not recognized her own mother. A key step, their mother says, has been watching her two daughters smile for the first time. “I am just so happy,” says Ms Al Shams. “I can place my trust in the doctors’ care here. Now they are moving and they can recognize me for the first time.”
Ms. Al Shams, from Dubai, says it was when Sara was just six months that she began having difficulty breathing and consuming food. Three months later, doctors confirmed Sara had muscular dystrophy. After Noor also had the condition diagnosed, the sisters were in and out of hospitals in Dubai. But when Ms. Shams, who has since given birth to a healthy daughter and son, heard of Amana she moved them to the facility and has since watched both flourish. “When Sara’s answer is yes, she looks up, and when it is a no, she looks down,” says Janine Alaya, a staff nurse at the facility. “She always looks up when we ask if she wants to go to the mall,” she adds, smiling.
Her new-found communicating tools means staff know Sara’s favourite music is by Justin Beiber and One Direction. “Then she dances by moving her tummy and wiggling her fingers,” says Ms Alaya. “At first she was so shy but now she has improved so much.”
Dr Masab Moumneh, an adult and pediatric specialist in intensive care, says while these improvements seem small, it is providing the sisters with a chance to have their say. “Now they can choose the color of their clothes, the colour of their lipstick, the music they want to listen to. Yes and no are very powerful tools,” he says. The facility provides individual care plans for each patient, speech and language therapy – with a particular focus on quality of life.
In Sara and Noor’s double bedroom, the walls are adorned with giant camels and palm trees. Each bed is a splash of color, while the shelves are filled with rows of stuffed animals and games. A TV plays the Disney channel. Abeer Hussein Swaid, patient care coordinator of Amana Healthcare, which is to open a second, 150-bed facility, in Abu Dhabi next year, says the aim of the facility is to provide a “home away from home”.
Part of this strategy is taking them on trips to the mall, park or zoo, she says. “You can see the smile on everyone’s face here, it is like every patient is a member of the family,” she says. “They become part of your life.” The facility, which opened nine months ago, is a residential plot of 10 huge villas that has 31 patients but has the capacity for 80. Family rooms, relaxation rooms, sensory room and an outdoor park area all make up the plot which caters from those born with degenerative disorders, some with congenital diseases and some have been victims of accidents, such as car crashes, from which they will never fully recover.
Red, white and green tinsel adorn the walls and ceilings of the facility – a lasting memory of the huge 42nd National Day party thrown for the patients and their families. “It is as much for the family as for the patients,” says Ms. Swaid. “Just to see a smile on the face of the child or mother. That is what it is all about.”