Help Louise with Life Changing Spinal Surgery

Dear reader,

Thank you for already getting this far.

We understand and appreciate how difficult the last few years have been for everyone, so we do not take this decision lightly.

However, we have been given no choice but to seek help from others for a life-saving and altering surgical procedure.

Louise is a 36-year-old mother of 3.

In December 2019, she was in what should have been a minor car accident. Instead, however, Louise's life has changed unimaginably due to unknown preexisting medical issues.

From being a fun, active mother who loved raves, parties in the woods and late-night walks on the beach to being in a wheelchair and bed bound the majority of the time; this is the harsh reality of what it is like for Louise. We were planning a wedding, but it is hard to do that when you don't know if you can even walk down the aisle.

But there is a solution.

In brief, we are seeking to raise £50 000.

This money will be used for spinal fusion surgery to stabilise and correct the cranial/spinal instability.

This is not available under the NHS. In fact, it is not available in the UK. We have to journey to Barcelona, a huge undertaking for us.

We understand that not everybody will understand all of the medical jargon, so please scroll further for more details on the condition.

Without this significant and costly procedure, Louise's quality of life will continue to deteriorate. But, unfortunately, it has been known for people with this condition to lose their quality of life even further as a consequence, so we cannot afford to lose more precious time.

Thank you to all of you who donate and to all those helping raise money in other ways. We will not overcome this without your help, and we cannot express our gratitude. You are helping a young woman get her life back, which is priceless.

For more details on the disabilities, please see below for a breakdown of the costs involved.

The Disabilities

Louise suffers from something called Cranial Cervical Instability (or CCI). This is where the junction between her skull and spine is weak; this weakness can also extend further down the spine, which it does in Louise.

This weakness leads to a whole host of neurological and physical issues, especially when compounded with a brain herniation (where the cerebellar tonsils stick out the base of the skull). This was diagnosed as Chiari malformation after the accident but has since been considered as Chiari-like.

Essentially, the tonsils of the cerebellum descend lower than they should, jutting out of the base of the skull. This condition causes a wide range of neurological disorders but mostly causes incredible headaches.

Ultimately, there is a lot of compression on the blood vessels and spinal cord within the neck, only made worse by the weakness and instability. You can see this compression in the image below, where the black bone is compressing the dark grey cord at the base of the skull.

Symptoms Louise suffers from include:

This condition was possible because of the underlying Ehlers Danlos Syndrome , or EDS, which is a hypermobility syndrome where connective tissues in the body are weaker and too stretchy.

This includes all the collagen, tendons and ligaments. This condition meant that the tissues holding Louise's neck together did not recover from the whiplash injury and instead got worse.

Unfortunately, EDS has no cure, but it can be managed with proper physiotherapy and routine. At current, that would be impossible for Louise given the CCI and herniation. For now, she is relying on braces to hold her togather.

Therefore, we are seeking surgery from one of the world's leading experts to stabilise Louise's neck and spine and remove a small portion of her skull to allow the Chiari-like malformation more room, relieving the pressure.

These surgeries are called Spinal Fusion and Skull Base Decompression.

Spinal fusion will involve using donor bone to strengthen and fuse the cervical vertebrae together. Although this limits the movement of this area of the spine, it provides the strength needed to allow the rest of the spine to function correctly.

Decompression involves removing a small section of bone from the base of the skull and possibly from the first vertebrae. This will help reduce the pressure on the brain and allow the fluid in and around the brain and spinal cord to flow normally.

The Costs

We are painfully aware of how much money this is.

This is a life-changing sum of money, but that is exactly what it would be used for.

We only get one shot at life and Louise is desperate to have hers restored.

Thank you.