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Ruby’s Story Age 13, South Wales, UK

 

She truly is one of a kind.’

 

Hi everyone this is my daughter Ruby, she is 13 years old and has a rare brain disorder called Polymicrogyria. She also has a few other conditions too.

 

Ruby was born in 2006. My pregnancy and labour went absolutely fine and i was happy being a new mummy at the young age of 16.

 

In 2007 when she was 8 moths old we noticed she didnt have much head control and were referred to a pediatrician who planned for us to stay in hospital for a week for her to have tests and checks. They thought she had a form of cerebral palsy and global development delay. We were back and forth to the hospital alot after this for appointments with different consultants.

This was a really hard time for me as a mum, to find out that your child will never walk or be able to call you mummy or say i love. I was absolutely heart broken, why Ruby, why my beautiful little girl.

 

I was so lucky to have the support from my mum who came to every appointment with me.

 

She was seen by the ophthalmologist who diagnosed her with optic atrophy and corneal abrasions. He spoke to me and decided he would put Ruby on the register as severely sight impaired. Ruby was also referred to the cardiology team for her heart. We also took her for x rays and tests this is when we found out Ruby also had scoliosis along with problems with her hips.

It was so much to take in in such a short time I was truly devastated.

 

Ruby started in a special needs school and was doing great learning to walk with her walking frame doing paintings. She progressed so much and loved being with her teachers and friends.

 

She was then diagnosed with Dyskinetic movement disorder which can be so tiring for her.

 

In 2013 my world came crashing down and We were told Ruby would have to have open heart surgery to fix her ASD. Ruby had only ever had 1 operation prior to this to have the ligaments cut in her toes. I couldn’t stop thinking about how her heart wouldn’t be beating for itself and the next time i would see her she would be wired up the lots of machines.

 

As always, Ruby was stronger than me and pulled through it and was back to her happy self smiling away like nothing had happened.

 

In 2015 Ruby started having jolts in her sleep and was sent for a M.R.I scan to see what was going on in 2016 we had a new diagnosis for her widespread Polymicrogyria. The jolts kept happening and got worse as time went on so we were sent for her to have an E.E.G which came back normal. I recorded these episodes she was having as they just got worse and worse.

 

In 2018 Ruby was diagnosed with epilepsy. She has 3 different types of seizures. tonic clonics, spasms and abscesses out of everything Ruby has been through in her 13years so far i have to say epilepsy absolutely kills me. Having to watch her have seizures knowing i cant do anything but follow her care plan and administer her emergency medication is so heartbreaking but she takes it all in her stride.

 

She is amazing and always has the brightest smile on her face. She truly is one of a kind ❤

Thank you for taking the time to read our story.

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