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Carol ‘s story

Hi everyone, My name is Carol Ossai-Nwosu, I am the Founder and Chief Executive of Sickle cell and Young Stroke Survivors.

I am mum to Daniel (19 years) who has Sickle cell anaemia and has had the main 2 types of stroke Ischemia and haemorrhagic. In total Daniel has had over 5 major strokes, many mini strokes and lots of other complications that childhood stroke brings.

Daniel had his first stroke at 6 years olds and  I can tell you it was the worst day of my life,  I really hate to recount that morning, it was a terrible terrible day.

The Stroke signs were all there but I did not know what they were. #FAST

His whole side was paralysed, he had a wonky smile and he was as cheeky as ever, I gave him a bath, fed him then called a taxi not an ambulance to take us to the hospital.

Lets just say that in hindsight, I did all the wrong things that you would do to someone who has just had a stroke let alone a 6 year old child.

On reaching the hospital it was confirmed that it was a stroke and that when our Stroke journey began. He was rushed to intensive care where a Blood labourious blood exchange was done almost immediately.

Looking after a child with sickle cell is not the easiest of thing to do but with stroke thrown into the mix it is a recipe for disaster but you learn from your mistakes along the way.

I had to find my own way of coping, caring and managing his care from personal research and information sourced from Doctor, conferences and the internet.

Daniel was in hospital for about a month as he had to learn how to walk as my house had a lot of stairs, his gait was wide because he had foot drop and his elbow would automatically pop up (the number of times he elbowed people was to many).

Daniel has always been a fighter; before his first stroke we were in and out of hospital every 4 to 6 weeks with one complication or another, I even had a bag packed just in case as most of his painful episode started after midnight..

Before the age of 6 he had already had 4 operations and countless hospital admissions.

In 2007, Daniel had one of the worst strokes ever, he had a bleed in the brain! He has Moya moya syndrome from the extensive narrowing of the blood vessels in his brain and one of the minute blood vessels that he sprouts to bypass blockages burst!

This started as headaches (this time I knew what to look out for) that would not be relieved by painkillers so I rushed him to hospital. He was immediately admitted and he 

fell into a coma for 3 days. 

There is so much more that happened that I would like to share and you can reach me through the charity.

You can email me at Carolnwosu@scyss.org

So why did I start Sickle cell and Young Stroke Survivors?

I felt that it was important for me to share my experience and the information that helped me cope and felt it should be made available to other families that were going through the same predicament.

When a stroke strikes, families are left with a sense of loss and a new disability which may bring on more complications such as learning disabilities, behavioral changes, epilepsy, mobility restrictions and many more. These are new changes which the parents/carers and the child have to get used to.

In Sickle cell it will include navigating various departments, hospitals and seeing various health professional. which can be very overwhelming, tiring and depressing.

Sickle cell is life changing but with a stroke on top it is

world changing, routine changing and mind changing!

I was able to share and talk about it, I had close family which is very important as a support system.

But I still felt very alone, sad and confused, there was just so many things to navigate.

I started the charity in June 2005 when the specialist Nurses started to refer mums to me. I did not mind as I knew I was not alone, and talking with other mums and helping them was a great therapy for me.

As our need grew and more recognised we registered as a charity and have been going on ever since, When I called The Stroke Association in September 2003 to find out what to do, they simply told me they do not cover stroke in children.

Now, this has now changed and we are working very closely with the Stroke Association since 2008, we are have published a Sickle cell and Stroke booklet together (here’s link) and are part of the Childhood Advisory group as well as Childhood Stroke Advisory Committee and The Childhood Stroke Guidelines update group.

For more information on childhood stroke visit The Stroke Associations childhood stroke page – https://www.stroke.org.uk/sites/default/files/childhood_stroke.pdf

 

 

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