Parents of teenager who died of rare brain disorder share her story ahead of her 15th birthday

Joy Osundeko from Parr was just 14 when she died in her sleep on June 13, 2022 from a condition called Moyamoya.

Joy was born with several health conditions, including Down Syndrome and chronic lung disease. However, it wasn’t until three years ago that her parents Bisi and Mayor Osundeko discovered she had the rare blood vessel disorder.

Bisi, who is a councillor for Parr as well as a published author and disability advocate, said: “My pregnancy was normal but after she was born we were told that she had complex health conditions and Down Syndrome.

“I called her Joy because she brought it into our lives after my mum died, and her smile could light up any room.

“She had the most complex health conditions, more than any other child in St Helens and defied all the odds. But three years ago my husband realised that Joy was using one of her hands to support the other to do basic tasks.

“We initially had treatment at Manchester Children’s Hospital but when we moved to St Helens we were transferred to Alder Hey [Children’s Hospital] and there they listened to my husband’s concerns.”

Joy’s dad, Mayor, 43, added: “Joy was always very active with her hands, she ate with her hands and used to do gestures to show she was excited.

“So, when she stopped this and had to use one hand to support the other, I knew something was wrong. Doctors kept saying it was part of her Down Syndrome, but we read up a lot and knew it was not.

“As parents you just know, and when we were transferred to Alder Hey a doctor finally listened to our concerns.”

Bisi, 40, added: “We were called into the ‘bad news’ room and got told with a load of people that she had a condition called Moyamoya and when I heard the name I laughed. I thought nothing that funny sounding can be serious, but it is.

“Basically, they didn’t understand why she was still alive at the time with this condition.”

Moyamoya is a rare condition in which the blood vessels (internal carotid arteries) that supply blood to the brain become narrowed.

This limits the flow of blood to the brain and puts them at risk for stroke.

The brain tries to make up for reduced blood flow by growing new blood vessels, but they eventually stop working.

The name Moyamoya, which means puff of smoke in Japanese, refers to the smoke-like appearance of these new blood vessels on an X-ray.

Bisi added: “We were told her limited hand movement was down to her suffering mini strokes and headaches, which with her being non verbal she couldn’t explain to us.

“We were told her best option was an eight hour surgery, which turned into a 12 hour surgery to add blood vessels.

“However, after that she lost the use of her hands entirely and had to have full use of a wheelchair.”

Despite this, Joy lived a full life, attending Lansbury Bridge School, enjoying time with her parents and brother Joe, 13 and her friends and carers.

However, on June 11, three years after her operation, Joy went to sleep and was unable to wake up.

She was transferred to Alder Hey Children’s Hospital who explained to Bisi and Mayor that their beloved daughter had suffered a stroke leading to brain stem death.

Bisi said: “Her heart was beating with help of a machine as she used at night anyway, but she was gone. I didn’t understand.

“We had to turn the machines off, the hardest thing we’ve ever had to do, but they explained she was already gone.

“So little is known about this that even in our grief we just have to raise awareness for this condition.

“The pain of losing my smiling daughter – especially after the last thing I did before she went to sleep was taken a picture of her smiling – is just too much.

“Her first posthumous birthday is August 31 and as well as missing her, we want more than anything to push for more research. They know very little about this condition; one of her doctors had to go to America to learn about it.

"Parents have to insist on an MRI if they have concerns. If they are diagnosed early and this is the case then treatment can start early.”

Symptoms that of Moyamoya are: a brain haemorrhage, headaches, developmental delays, aneurysm, involuntary movements, problems with cognitive abilities, problems with your senses and seizures.

The condition is more prevalent among females and of Asian ancestry. It can also occasionally be prevalent with people with certain conditions such as Down Syndrome.