Thanks for taking the time to visit my JustGiving page.

On May 27th last year, as we set off on a family holiday to Sicily, my 27 year old daughter Cecily complained of a strange feeling in her left side and leg. Despite both my husband and I (both doctors) examining her it was not clear what the problem was, though it worsened throughout the week becoming painful and difficult for her to walk.

By June 12th she had had an MRI showing demyelination (irreversible damaged to the nerve lining) in the brain and spinal cord; a devastating result for a young adult starting out in their life.

Over the next few weeks Cecily went on to suffer from pain, arm spasms, difficulty with walking and extreme tiredness. Despite these uncomfortable and frightening symptoms, it was 3 weeks before she was seen by a specialist who was able to make an official diagnosis of MS.

In fact she was lucky as this is considered a quick diagnosis of MS. There is a growing tide of opinion that the window of opportunity to delay progression of MS is short. However, the sometimes difficult to describe and varied symptoms can delay early diagnosis and treatment.

Multiple Sclerosis is the commonest cause of disability in young people. It can affect any part of the nervous system at any time, potentially affecting your ability to walk, speak, swallow, make decisions, your continence, balance and sensation. It causes pain, depression and extreme fatigue.

I had heard of MS and assumed people with it got a high level of treatment, attention and support due to its disabling effects. However it is a rare disease and not a priority for government spending in Primary Care nor under the benefits umbrella. There is no cure.

Cecily is fortunate to have had treatment to delay progression but this has left her immunocompromised and at risk of thyroid, kidney and clotting failure, necessitating monthly blood tests for the next 5 years. 

She will not know if it has worked unless she suffers another relapse of serious symptoms, in which case she will know only that it has failed and a new treatment will need to be sought.

We are very fortunate to have the NHS and a welfare system in this country but they do not provide enough, which is why charities pop up to fill the missing pieces. MSRRF is based in the North East and helps with research, emotional and physical support for MS sufferers.

People who accept and face their diagnosis of MS have the best long term outcome. Money can buy the holistic support they need to in order to do this.

Cecily has faced her new future with courage and good friends and is fortunate enough to receive help from her family - I cannot imagine what it must be like for a young adult to face this uncertainty alone.

Please consider donating to this charity and helping young people with MS to go forward in fulfilling whatever roles and dreams they could have, if they got the right help.