In 2019 my cheerful little daughter Yasmin has been diagnosed with Chiari Malformation and Syringomyelia. She is now 7 years old and is still a happy strong girl, despite the nasty symptoms including daily nerve pains in her legs and regular migraines.

Chiari Malformation is a neurological condition where the cerebellar tonsils herniate outside the skull, leading to crowding of the brain stem. Chiari effects 1 in 1000 people and severity varies from person to person. Generally it's not life-threatening, but it can be in severe cases such as Yasmin's. Some people with Chiari can develop Syringomyelia, which is when a fluid filled cavity (called syrinx) in the spinal cord forms. If the Syringomyelia is not treated as soon as possible, this then leads to damage to the spinal cord. 

Unfortunately it is very hard for doctors to detect Chiari, because each person with Chiari has different symptoms. There are so many different symptoms people with Chiari can suffer from such as 

• headaches 
• migraines
• muscle weakness
• balance problems
• scoliosis
• wide spread body pains
• dizziness
• trouble swallowing
• feeling or being sick
• numbness
• loss of feelings in arms or legs
• loss of bladder or bowl control
• sleep apnea
• in extreme cases paralysis or death.

People with Syringomyelia may experience additional problems such as difficulty walking. 

When Yas was still a toddler, I've already noticed her regularly vomiting, crying when she was sneezing or coughing due to it being a trigger for strong nerve pains in her legs and arms, struggling to walk more than 5 minutes and complaining of stomach pain on a regular basis. But every time I've taken her to the GP for many years, they have not picked up the Chiari as these symptoms could have been pains from things like growing pains, food that hasn't been chewed properly, constipation etc. Therefore I believe the condition is one lacking research and more Chiari specialists are needed in the UK. 

In 2018 Yasmin has been referred to get a X-ray done, as I've noticed a curve in her spine (scoliosis). The GP has then referred us to a pediatric bone specialist, who requested for an MRI. The spine specialist has then found the Chiari on the MRI  and referred us to a consultant neurologist. The consultant neurologist has then told me in 2019 that Yasmin had a massive syrinx and needed to have an emergency operation to prevent her from getting more damage to her spinal cord and pressure on the brain. Yasmin has then had a major brain and spine surgery in September and October 2019 called decompression surgery. 

The decompression surgery is done under general anesthetic and involves the neurosurgeon to make a cut at the back of the head and remove the top piece of bone of the spine and a small piece of bone from the lower part of the skull. This procedure comes with many risks and complications, as well as months of recovery. Yasmin had some complication after her first operation, hence needed to go for a second one in October 2019. This procedure doesn't reverse any nerve damage and may not improve any of the current symptoms. 

It's now been about 1.5 years since my little girl had the operation, but she's still suffering from regular shooting nerve pains in her legs, which often prevents her from sleeping and can't be controlled with paracetamol. She vomits about 3-6 times a week as her gag reflex gets triggered sometimes while she eats. She can't walk for more than 10 minutes as she gets strong pains from muscle weakness and has to wear insoles for life. Now and again she gets phases of weeks long headaches and migraines on and off. Still suffers from daily belly ache. Seeing her in so much pain everyday with no available meds that could control or reduce these pains, just breaks my heart. Every time I see her cry or scream in pain my wish is to suffer these pains for her instead so she could enjoy life to the fullest. 

Knowing that Yasmin and many other kids around the globe suffer like this with this condition that still lacks quiet a lot of knowlege, I Lei Hang also known as The Thrifty Island Girl have decided to take on the Ultra Challenge on the Isle of Wight to raise money for Great Ormond Street Children's Hospital to help children with rare conditions such as my daughter Yasmin. I will be walking 25km for this cause and also feel close to this charity as I know that this charity/hospital is part of UCL. I've done my masters in Infection and Immunity at UCL, while I was pregnant with Yasmin and know that they are great at research.

Please give your support so that all these kids out there have a better chance to lead a fuller life.

Thank you!

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