The long but hopeful journey

1000x1000-MAF_MG-2017-07-829.jpg

MAF in Mongolia, known as Blue Sky Aviation, connects parents of children with learning difficulties with Reaching the Light, a developmental centre providing therapy and rehabilitation.

Four-year-old Namuun wears a white polka-dot dress and a bright smile that could melt hearts. She runs the length of the physical therapy room multiple times, occasionally with a small wobble. When asked, she sings a song, then runs through some speech therapy exercises with Reaching the Light’s Enkhtsetseg (Eenee) at Ulaangom Hospital in the far northwest of Mongolia, close to the Russian border.

None of these simple tasks came easy for Namuun. At age one-and-a-half, Namuun couldn’t crawl, walk, or talk. When Oyunaa, her mother, realised that her baby girl wasn’t developing normal physical and speech skills like the two older siblings, it broke her heart. “I was really shocked and depressed and cried a lot,” Oyunaa remembers.

Although Mongolia’s health system has improved greatly over the years, professional therapists for children with developmental disabilities have been almost non-existent, especially in regions outside the capital of Ulaanbaatar. The recommended treatment for children with special needs is often wrong, resulting in years of lost therapy that could have improved their lives.

One exception is Reaching the Light whose mission is to provide therapy and rehabilitation services to families living in rural areas of Mongolia through screening trips to remote locations, a developmental centre in the capital of Ulaanbaatar, plus establishing satellite developmental centres in seven locations across the country where children and their families can continue to grow and thrive. Blue Sky Aviation (MAF in Mongolia) supports Reaching the Light through flights to the rural locations, where they screen new patients and follow up on those who have completed two-week therapy sessions in the capital.

During the summer of 2014 when Namuun was one-and-a-half years old, a team of therapists from Reaching the Light flew Blue Sky Aviation to Oyunaa’s province in the northwest of the country to screen special needs children. Ulaangom near Lake Uvs is 1335 km (830 miles) from Ulaanbaatar, a trip that takes approximately 24 hours by road.

Physical therapist Dolgormaa (Dogi) ran tests on little Namuun and assured her mother there was hope, that her daughter would improve and walk with regular therapy. Oyunaa and Namuun flew with Blue Sky Aviation to the capital to join a two-week intensive therapy programme at Reaching the Light’s developmental centre where parents receive training while children receive therapy services. Six months later the two attended a second round of training and therapy.

Namuun’s remarkable improvement over the past two-and-a-half years is due in large part to the significant commitment and perseverance of her mother who quit her job to stay home with her daughter.

“Every day I spend about five hours working with my daughter. I really talk with her. When I do the housework, I talk and tell stories, and I read books to her. Now she calls everyone ‘daddy’ but every time I correct her and say, ‘I’m your mother’. I ask what her need is, and she’s learning to express that.”

Namuun can now communicate her basic needs such as wanting to eat, drink, or use the toilet, and the Reaching the Light staff is thrilled to see the progress she’s made during their follow-up assessments.

“I’m really thankful for Reaching the Light and this local satellite centre,” says Oyunaa who visits the satellite centre for one week out of every month. “I’m so happy to see my daughter walk like a normal child. Now she goes to a normal kindergarten, so when people see my daughter, they don’t realise she has a problem.”

Oyunaa is also grateful to Blue Sky Aviation. “The first flight was so important because the government flights are too expensive and most families can’t afford those flights. At that time, five families flew together to Ulaanbaatar and the pilot was so kind and very good with us. It would have been so difficult with this little child to go by car for two days. I’m really thankful for Blue Sky.”

Nine-year-old Nomin, is another little girl whose life has drastically changed since her first flight on Blue Sky Aviation. The year was 2013 and she was just five years old. “It went up very fast and was a little scary,” she recalls. “I felt a little bit sick.”

That day and the following years began a radical change for Nomin and her family. It was the day they flew from their home in the far northwest of Mongolia to the capital Ulaanbaatar to begin intensive physical therapy for Nomin at the Reaching the Light Developmental Centre.

“When we met the Reaching the Light people in Ulaangom, it was the luckiest moment of our lives,” Nomin’s father, Anglan, says. That moment happened in his hometown on a Reaching the Light trip where physical, speech, and occupational therapists, plus a medical doctor, screen special needs children. For Nomin’s family, it was the light at the end of a long, dark tunnel.

Starting on Nomin’s first day of life, her skin began to turn yellow from severe jaundice. Unfortunately, Anglan and his wife didn’t know much about jaundice, didn’t know that it could be easily treated or could cause serious harm. By the time they admitted her to the hospital to receive phototherapy treatment, the jaundice had damaged her brain.

The parents had no idea what to do. They visited many doctors and medical professionals, both in their home province and in Ulaanbaatar, receiving varied diagnoses such as cerebral palsy or hip dislocation, and treatment recommendations including medicine, massage or braces for both legs, which caused Nomin to cry and cry from the pain. Eventually Anglan realised that none of these were helping but didn’t know where else to turn, until they heard that a Reaching the Light team would be screening special needs children at their local hospital.

Following the screening, the team recommended that Nomin and one of the parents come to their developmental centre in the capital. Each session lasted two weeks, once in 2013 and the next in 2015. Blue Sky Aviation flew them both times, a four-and-a-half-hour flight, or two days by road.

“Reaching the Light gave the right diagnosis and understood what the cause was and what the future potential is,” Anglan remembers. “Many things became very clear, so we didn’t have to visit other doctors. We started doing the proper exercises with Nomin and recognised a lot of improvement. For example, her balance and speech improved.”

Each time a team from Reaching the Light comes to their province, the satellite centre at the local hospital announces the visit in advance and Nomin’s parents bring her for a follow-up exam and updated therapy recommendations they can work on at home. Anglan is so happy with the help that Reaching the Light and its satellite centre has provided that he hopes someday to provide help toward this kind of charity.

Father and daughter sit on a metal bench in the hospital hallway of their hometown, waiting their turn to see visiting Reaching the Light’s speech therapist Eenee, physical therapist Dogi, and doctor Dure. Nomin wears a bright pink dress and a matching wide-brim hat while father and daughter play a game of “Rock-Paper-Scissors”. It’s clear the two adore each other. “We are really close friends,” Anglan says.

Nomin’s cognition appears to be normal and above average in math. “She’s the top math student in her class,” her father brags. In other areas she still struggles. “Her balance is a problem. Writing is not so good. Running and physical work are difficult for her. If she becomes tired then speech is difficult, but she’s getting better. Today she took some advice from the speech therapist.”

For 21 years, Anglan has been teaching high school-level chemistry to pupils interested in entering medical university. Approximately 300 of his former students have become doctors. Thanks to Reaching the Light, he now sees hope and a bright future for his daughter. “I hope she will be a pharmacist one day,” he says. “I’ve already started to teach her.”

Story by Mandy Glass & Photos By Michael Duncalfe