Just4Children campaign for boy with diplegic cerebral palsy

Asger Marsh was born at Gloucestershire Royal Hospital prematurely at 31 weeks and the day after his birth his lungs collapsed.

He was diagnosed with diplegic cerebral palsy, a neurological condition, at just 18 months old.

Now, at age four, Asger’s leg muscles can’t grow at the correct rate, causing him pain when he tries to stand.

Asger, who lives with parents Sam and Holly Marsh in Uplands, Stroud along with twin sister Tiggi and elder sister Aubrey, six, needs to have a life changing operation.

He was diagnosed during lockdown and the family say they have been in limbo for a long time waiting for NHS queues to reduce.

They had to wait more than a year for an MRI scan to confirm the diagnosis and last year they were told by the NHS that he could have spinal surgery which would help his legs and reduce the pain he is experiencing, giving him a chance of walking more normally.

However, with issues such as the NHS strikes and Covid backlog, this option has slipped away from the family, who have decided to go private.

"We have such a great team of NHS staff that work with Asger and they are truly dedicated to looking after him but unfortunately it is the system itself that has let us down," said mum Holly.

The family have now launched a campaign through charity Just 4 Children to raise £60,000, which will help towards surgery, post-op and ongoing physiotherapy plus travel and accommodation. So far £20,000 has been raised.

The family say it is their ‘one opportunity to give Asger the best chance of a pain-free future’.

“Asger is such a happy little boy but he doesn’t yet realise the challenges that he is facing,” said Holly, who moved to Stroud 10 years ago with husband Sam.

Holly is a full time mum for the three children plus a carer for Asger, while Sam works full time for a company in Stroud doing logistics.

“From the start, life has been really tough for Asger,” said Holly.

“It was touch and go at the beginning of his life and we didn't know if he would make it through the first week of his life.

“Asger fought through which just proves his strength and determination.

“He has to attend a lot of medical appointments and is clearly in pain which is hard to watch.

"Asger's twin sister Tiggi has always been in his shadow, he has to be picked up a lot to help him get to places and Tiggi cannot understand why we don't pick her up as much.

“His older sister Aubrey is brilliant and spends a lot of time helping him get around the house.

“Every day we have to 'put on our physio hats' and do a lot of muscle stretches to help Asger as best we can and make his life as 'normal' as possible.

“Asger was diagnosed in lockdown and so we have been in limbo for a long time, waiting for NHS queues to reduce and things to open again.

“In 2022, after a year of difficult and stressful appointments, we were told by the NHS that he could have spinal surgery which would ultimately remove the spasticity in his legs and reduce the pain that he is experiencing and give him a chance of walking more normally.

“This was supposed to happen this year but this option has slipped away from us.

“He needs the spinal surgery urgently which is why we have taken the decision to go privately and give him the best chance that we can.

“We can only dream of being able to go to the park without having to consider all of the barriers that we face every time we go out as a family.

“We cannot believe the overwhelming response we have had so far and cannot thank people enough for their generosity.

“It is extremely touching and very emotional to see the fantastic support we have received.”

Donate at bit.ly/3yS6vvE