Why I'm I doing the London Marathon? 

I have asked myself that question everyday since I started training.

7 years ago......

Our precious baby twins Alfie & Yasmin were born. This is where my journey begins. Yasmin was born with a very rare neurological condition called Sturge Weber Syndrome. This changed Nicola, myself and Yasmin's 3 sibling lives forever......

Yasmin has uncontrolled epilepsy. Yasmin has a birthmark that covers nearly the left hand side of her brain. Thus causing her to have seizures. Over the last 7 years she has tried 17 different seizure drugs. None of which have been successful. She has had literally thousands of seizure with numerous admissions by ambulance to hospital.

When Yasmin was about 2 she was spending a lot of time in hospital and was having at least one hospital appointment a week. I felt that I wanted to give something back so decided to sign up for the Manchester 10k. I hadn't done any running since my youth! So didn't particularly enjoy the challenge I had set myself, but soon got in to the swing of things and raised lots of money on the way for SW UK.

Yasmin has a large port wine stain that covers the left hand side of her face.
Yasmin has had 20 laser treatments under general anaesthetic to try and stop the blood vessels from thickening and to try and lighten the PWS.

Yasmin is registered partially sighted and has glaucoma. Yasmin has had 10 major operations on her left eye to try and save her sight and reduce the pressure in her eye to prevent irreversible damage to her optic nerve. The present situations is that it is still not under control she is attending the eye hospital regularly to try and reduce the pressure. There could potentially be more scare tissues on her eye that may need removing again?

Yasmin has a left visual field defect which results in her having poor balance and she walks in to things on a regular basis. Including walls, doors and even people in the street. She struggles to see the TV.

Back to the original question why I'm doing the London Marathon?

On 27th June 2013 Yasmin (aged 5) was admitted to Great Ormond Street hospital and she underwent major brain surgery to disconnect her left temporal, parietal and occipital lobes in her brain. It was the longest 9 hours of our life waiting for her to return from the operating theatre. To try and stop the 60 plus seizures a day she was suffering. She also had 2 parts of her brain removed from the middle area of her brain to try and prevent reconnection. The operation has dramatically reduced Yasmin's seizures and helped to kick start her speech and academically has excelled from where she was and is managing to retain the information she is given . As previously every time she had a large seizure she would loose information and skills gained. Unfortunately she still remains on a combination of 3 epilepsy drugs twice a day. Which in itself keeps her brain in a foggy state most of the time.

Yasmin remains under the care of Great Ormond Street and they are presently working hard with her and she is undergoing lots of test to see how they can further improve Yasmin's quality of life. So it is my turn again to pay back and train hard and raise money for a hospital who has given and continues to give Yasmin and her family hope they will give Yasmin the upmost care and dedication to take her to her true potential. All the hospitals that Yasmin is presently under have all been brilliant on her journey. We are more than grateful and realise how lucky we are to have the NHS.

More than anything my motivation is Yasmin herself. I gave up work for my baby girl, Yasmin was 1 1/2 and I become her main carer. I have to admit this is the hardest job I have ever done! It has been and will continue to be one hell of a journey and what an emotional roller coaster we have been on together.

Thousands of seizures.
Approx 50 General Anaesthetics.
10 Eye operations.
Hundreds of hospital appointments.
Hundreds of miles driven to get her the best care.
Building relationships with consultants, doctors, nurses in a number of hospitals.
Manchester Children's hospital.
Alder Hey hospital.
Leighton hospital.
GOSH.
Young Epilepsy Centre - Surrey.
Numerous MRI's, EEG.
The needles, injections.
Drugs trials.
The nose bleeds.
Fractures, stitches,
Eyes drops that sting and burn.
The lack of sleep due to epilepsy plaguing the night.
The tears the upset.
So training hard and running the London Marathon is just a drop in the ocean, nothing compared to your daily struggles with Sturge Weber Syndrome.

Why should you give GOSH money? Well we never needed the specialist expertise until Yasmin arrived in the world. Only then when you go to GOSH do you realise what an amazing job they do and how poorly the children are who attend there. GOSH rely on lots of donations to help with their very important work on researching rare diseases/conditions and finding cures for very sick children.

Please can I ask you to put your hand in your pocket and sponsor me for this amazing cause. I hope you and your loved ones never have to experience a sick child with a very rare condition that has to be cared for by Great Ormond Street.

"Yasmin you are one of the strongest most inspirational people we know. You struggle and cope both at the same time. You have been through so much in the last 7 years more than people would go through in a life time. You have an amazing personality and a cheeky giggle. You have raised so much awareness for SWS world wide. As much as our journey isn't easy and life can be tough for us all. We couldn't imagine life without you. So we will continue to get you the best care and best opportunities there is out there. "
Love you, Mummy, Daddy, Benji, Harvey, Alfie xx

If you would like any more information about Sturge Weber Syndrome.
Or Great Ormond Street Hospital and what they have done for Yasmin please contact us.
nicolacolenso@icloud.com
Mobile:- 07759 63 87 29

Thank you for taking the time to read the reasons why I'm fundraising for GOSH and running the London Marathon.

Wish me luck, Kindest Regards

Rick Murray


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