What happened?

My son Corey suffered a stroke when he was 7 years old, caused by moyamoya disease. He came home from school and told me his arm felt strange. He fell asleep and me and his dad had difficulty waking him up. When he finally woke up, we decided it was best to give Corey a bath and get an early night.

However, we noticed he couldn’t talk and recognised it as a sign of a stroke. We immediately called an ambulance. When we got to hospital, doctors told us they thought Corey had had a fit and to stay in hospital.      

Corey was discharged the next day, but three days later the same thing happened again. This time, doctors did a CT scan and told us that Corey needed to go to a specialist Children’s Hospital due to abnormalities on his brain. It was here that Corey had an MRI scan and doctors told us that he had a stroke and multiple mini strokes, known as transient ischemic attacks (TIAs).

The following day a neurologist informed us that Corey has a rare brain disease called moyamoya disease. After his diagnosis, Corey experienced severe headaches and several TIAs.  

We don’t know if some of his difficulties, such as poor attention and memory problems, are due to his Autism or because of his stroke.

Moyamoya disease    

Moyamoya disease is a progressive condition which is so rare it only affects one in a million people in the UK. It’s a blood vessel disorder where the carotid artery in the skull becomes blocked or narrowed, reducing blood flow to the brain.  

In March 2019, Corey had revascularisation surgery on both sides of his brain at Great Ormond Street Hospital in London. Surgeons spent more than five hours operating on him to increase the blood flow to his brain.

As a family, we’ve had to learn to adapt and protect Corey from a future stroke happening. Doctors have advised us on management strategies for moyamoya disease to help reduce the risk of future strokes and TIAs. These include staying hydrated, not playing contact sports or going on theme park rides.     

Recovery from surgery      

Corey amazed us with how well he did after his surgery - he was playing on the Xbox 2 hours after surgery! He was able to come home 4 days later. Corey had difficulty chewing for some time after his surgery. We took soft foods to the hospital and some home comforts, including Corey’s teddy.    

Doctors recommended for Corey to have 6 weeks or more off school after his surgery. After 2 weeks he started a phased return and was back full time by 6 weeks. He initially came home for lunch as his face was still swollen and he was only eating soft food.

Since the surgery, Corey’s headaches and TIAs have significantly reduced. The surgery made a massive difference to Corey’s health and his attendance at school.   

Effects of Corey’s stroke        

Corey was diagnosed with Autism a few weeks before he had a stroke. We don’t know if some of his difficulties, such as poor attention and memory problems, are due to his Autism or because of his stroke. Corey used to say “my moyamoya deleted my memory” when he had difficulty remembering things.

Corey experiences fatigue and he gets tired easily. We let him rest as much as he needs to throughout the day and he goes to bed early.

         

As a family, we’ve had to learn to adapt and protect Corey from a future stroke happening.

Before Corey had his surgery, he was often unwell and absent from school. This was a challenging time for us because school didn’t fully understand his condition and kept sending attendance letters home.

It made me feel like I was doing something wrong and took a toll on my mental health. It wasn’t until I shared a letter from Corey’s paediatrician explaining his health needs that the relationship with school improved.                           

Corey’s life now 

Corey is now 13 years old and in year 9 at school.  He goes to a special educational needs (SEN) secondary school and has an Education Health and Care Plan (EHCP).

After years of keeping our little hyperactive ball of energy calm, Corey’s hormones have changed and he has calmed down. He likes to stay at home and relax in his bedroom and loves playing his PlayStation. He’s a chilled and relaxed kid. We’re so grateful he is doing so well and we’re so incredibly proud of him.           

My tips for other parents  

• Put together an Emergency Health Care Plan – this explains what needs to happen should a stroke happen again and is useful for paramedics and doctors if a child is admitted to hospital. Corey keeps his plan in his school bag, so it is always with him.

• Educate school early about your child’s needs and share letters from professionals to support them to understand their needs.

• You might have to fight to get your child an EHCP and a place at a SEN school. To move the EHCP process forward, you can contact your Local Authority directly to request an EHC assessment.

• Look for any local SEN charities as they can help with finding an SEN school.

• Do your own research about what SEN schools are available and visit them to see if it’s the right fit for your child.

• If your child has social communication difficulties and is going through an Autism assessment, make a diary of all your observations such as your child’s behaviour throughout the day and how they react to different things. 

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