Dubai: Emily Chuhan is a very talkative five year old. As her mother Lydia, a British expat, says, "She is full of energy and sass.”
Looking at her, there’s no telling that she suffers from a rare brain disorder – known as Moya Moya Disease - and that she has been through two complex surgeries with innumerable hospital visits thrown in.
“Right from when Emily had a stroke when we were at a mall in 2022, her attitude to the challenges she has faced has been amazing. She never moans,” says Lydia.
What she doesn’t say, however, is that Emily owes much of the positive spirit to Lydia and her husband Jaz Chuhan, who have literally worked wonders to help her – and themselves – cope with her little known health condition.
What is Moya Moya Disease?
Moya Moya (translated puff of smoke) is a brain condition caused by the lack of blood flow to the brain, leading to blockages in the blood vessels and haemorrhage. Each blockage triggers what is called a transient Ischemic Attack (TIA) or stroke, limiting Emily’s chances of survival.
Given the unpredictability of the disease’s symptoms, it was a while before the Chuhans could get a confirmed diagnosis, let alone get it treated. Once that came about, the daunting task of dealing with it began. But they embarked on the journey in the most ingenuous manner.
Role play with dolls
“We knew that Emily would need to have surgery at her tender age. So we started to do role play with her dolls at home, pretend they would go to hospital to have a surgery on their head to make them better,” shares Lydia.
She says she bought multiple doctor play kits so they could try and get as many items that Emily would see in the hospital. “We would use these medical toys to help teach as many different words from the medical vocabulary as possible – canular, blood pressure monitor, surgeon, operation and so on. Emily even knows that the person who takes your blood is called a phlebotomist!,” she laughs.
“Every day we would pretend that her doll or teddy needed an operation and then give the doll ‘sleeping medicine’ and put a canular on it attached to a pretend drip. We would put a bandage around the doll’s head and then talk about the doll staying in hospital for a few days,” she adds.
Jaz says Emily would stand in front of her friends in school and tell them she was going to have an operation on her head to make it better so that she doesn’t get a floppy arm or slur her words again. “She was excited to tell them. As we look back, the role play therapy was a huge help,” he says.
PJs, boardgames and prayers
He remembers how in the run-up to the surgery, they talked a lot about blood tests. “We acknowledged her feelings of how blood tests are not very nice but assured her that it would be quick and that she would get a present for being brave. Once the test was done, she got to open a wrapped nail varnish and she soon forgot the trauma,” he recalls.
He says on the night before of her first surgery, she was excited to have a ‘sleep over’ at the hospital. “We took her favourite paw patrol duvet cover and pillow and some of her favourite toys too. We ensured her TV room had Netlfix/Disney+ set up. We bought some new PJs, dressing gown and slippers too. Her brother kept her entertained with the new boardgames she had as a gift. As a family we prayed to God together,” he says.
Lydia still remembers seeing her after the five-and-a-half-hour surgery in the ICU. “Nothing prepares you to see your child with so many tubes and the constant beeping of monitors. It was heart-wrenching. The next morning she went for a CT scan, but she handled it like a champ.”
Gifts for bravery
Whilst in hospital, Emily got more gifts for her bravery: A baby bath for her dolls and a little play house. “We wrapped up each present to bring a little positivity. Oliver insisted he be there with her. She was soon out of bed playing and was even singing ‘head shoulders knees and toes,” says Lydia. When Emily came home, the family baked a cake together, decorating it with some leftover fondant. The ‘Well Done Emily’ inscription and the small paw patrol characters on the cake did wonders for her. “We put a candle on it and sang ‘well done on your operation’ to the tune of happy birthday. She loved it and sent a picture to all her family in the UK.”
Recovering well, Emily was able to go back to school in two weeks. “Her teachers and school nurse were so encouraging. They dealt with her with such love and care and we will always be thankful,” adds Jaz.
Strength to strength
In January 2023, Emily underwent another surgery, but on the other side of her head this time. The weeks leading up to it entailed more role play. She was visibly more nervous, and more aware of what would happen. It was heartbreaking, say her parents, but they kept reassuring her she would be okay. “Emily was able to return home after four days. Emily would often dress up as a surgeon and say she wants to be a doctor (or sometimes a nurse),” says Lydia.
Ever since, Emily has has gone from strength to strength and doesn’t let her condition hold her back. She does swimming, gymnastics, ballet, rides her bike and plays with her brother. She needs to stay hydrated and take blood thinning medication every day, but otherwise leads a normal life.
Lydia and Jaz also took Emily for a holiday to London where she saw Frozen at the theatre in the West End. The family also had a second holiday in the Maldives where Emily snorkelled with fish, spent endless hours on the beach and in the swimming pool.
Promoted to FS2 now, Emily celebrated her fifth birthday this month. “She had a great time, and even had a horse-riding lesson,” says Lydia,looking forward to many happier returns of the day, with many more milestones
What the doctor says
Moya Moya (translated puff of smoke) is a brain condition caused by the lack of blood flow to the brain, leading to blockages in the blood vessels and haemorrhage. Each blockage triggers what is called a transient Ishemic Attack (TIA) or stroke.
The causes of Moya Moya Disease are unknown, and long-term results following surgery have been quite good, with long-term prevention of strokes, according to Dr. Gopalakrishnan C V, Consultant & Head in the Department of Neurosurgery & Spine Surgery , Medcare Orthopedic & Spine Hospital, Al Safa & the Medcare Women & Children Hospital in Dubai.
The doctor who is treating Emily, says “Emily has been on regular follow-up after her surgeries. She is coping very well without any significant episodes of transient ischemic attacks. She regularly attends school, actively engages in playful games and is like any other normal child of her age group.”