Casey was born a “Normal” child.

At our 20 week scan we were told that Casey only had 1 kidney. After he was born his kidney was found just in the wrong place, all was working well and at 18 months old we got told he was being discharged with no further concerns. Great! Later that same week we had an appointment because Casey was not yet walking unaided.

We got told at that appointment that he had Hypotonia (low muscle tone/floppy limbs). Physio was needed and tests to find out what was causing the Hypotonia.

By the time Casey was 3 years old he began to walk using a Walking frame and managed 20 steps unaided! Physio was helping, he was improving!

We were still undergoing genetic testing, 3 different hospitals and numerous medical professionals involved in Casey's Medical care.

In that same year we were told Casey and his Dad were carriers of SMA - Spinal muscle atrophy (a rare muscle wasting condition).

We went to be seen by Great Ormond Street Hospital and after more testing and biopsies and a 2 year wait, we were told that This Wasn't the diagnosis we weren't looking for.

No diagnosis, No treatment.

During this time Casey began to deteriorate. His muscles in his legs began to waste and he was no longer able to walk. His arms are becoming weaker and He has developmental delays and gets tired very quickly, which affects his speech.

We have many unknowns going forward.

We don't know how quick or if Casey will deteriorate further.

We are still undergoing further testing in the USA and GOSH. But it is very unlikely we will ever get a diagnosis or treatment - But we never give up Hope!

Casey is now a SWAN (Syndrome Without A Name).

Casey is an incredibly happy little boy, nothing ever gets him down, he tries to be as independent as possible and everyone falls in love with his infectious smile.

He is now 7 years old and full of life and joy.

He has his little Tiny Trax to whizz around in and we are incredibly lucky to have worked with some amazing Charities who have given us lifelines for Casey, to keep him independent and allowing him to be able to fit in with his friends.

Going forward we are having to have our home adapted and are planning a life where we need extra Care for Casey in the future but for now we are living each day as it comes and taking a leaf out of Casey's book and KEEP SMILING!

We want to keep telling Casey's story to raise awareness of SWAN and SMA.

Casey is now a SWAN (Syndrome Without A Name).

Casey is an incredibly happy little boy, nothing ever gets him down, he tries to be as independent as possible and everyone falls in love with his infectious smile.

He is now 7 years old and full of life and joy.

He has his little Tiny Trax to whizz around in and we are incredibly lucky to have worked with some amazing Charities who have given us lifelines for Casey, to keep him independent and allowing him to be able to fit in with his friends.

Going forward we are having to have our home adapted and are planning a life where we need extra Care for Casey in the future but for now we are living each day as it comes and taking a leaf out of Casey's book and KEEP SMILING!

We want to keep telling Casey's story to raise awareness of SWAN and SMA.

SWAN UK (syndromes without a name) supports families affected by a genetic condition so rare it often remains undiagnosed. They are the only dedicated support network for SWAN families in the UK and are run by the charity Genetic Alliance UK.

SWAN UK's aim is that every family gets the support they need, when they need it, regardless of whether they have a diagnosis or not. They work with UK based families of children and young adults up to 25 years old who are searching for a genetic diagnosis - bringing families together in a supportive community who understand the unique challenges of life without a diagnosis.