The phrase ‘mother knows best’ is often flung around households across the nation – yet for mum Storm Filitz, it holds a darker meaning.
Storm knew something wasn’t quite right with her now four-year-old son Grayson from birth in December 2021.
Grayson would ‘cry a lot as he got older’ and ‘seemed like a really unhappy baby’, offering a different parental experience from that had with his older sister Sky, who is eight.
It was not until he failed to develop as a ‘normal’ child that parents Storm and Peter Filitz began their battle to voice their concerns, eventually leading to his diagnosis of the debilitating condition Duchenne muscular dystrophy (DMD) – which has led them to create a GoFundMe for a treatment only accessible in America, costing £3.5million.
DMD is a severe, progressive genetic disorder that causes the degeneration of muscles and leaves sufferers immobile. It is a life-shortening condition, with a life expectancy of around 30.
It is a condition with no cure and notably claimed the life of motoring icon Enzo Ferrari’s son Alfredo, who died aged 24 in 1956.
‘Grayson just consistently missed all his milestones,’ Storm tells the Daily Mail.
‘He only sat up without assistance at eight months, started crawling at the age of one and took his first very wobbly steps on his second birthday. He was also non-verbal. He only said two words and it was Mama and Dada.’
Four-year-old Grayson Filitz was diagnosed with the debilitating condition Duchenne muscular dystrophy (DMD) after his parents battled for their concerns to be heard
His mother Storm knew something wasn’t quite right with her son Grayson from his birth in December 2021, he would ‘cry a lot as he got older’ and ‘seemed like a really unhappy baby’
Storm repeatedly raised her concerns with nurses during the three postnatal check-ins and felt she was being ‘fobbed off’ by GPs, who described Grayson as a ‘late bloomer’.
‘The nurses kept saying to me he was okay and I kept being fobbed off by GPs, who said he was a “late bloomer”,’ Storm says.
‘I kept saying “no, there is something wrong with my child”. He seems to always be in pain.’
The parents from Southampton, fuelled by frustration with the service they received, sought out private medical help in 2023 when he was one.
‘I looked online and found a private paediatrician in Windsor,’ Storm explains.
‘The paediatrician looked over Grayson and said he is hypermobile, which is probably causing him to be unsteady on his feet. He had an X-ray for hip dysplasia, which came back negative. So the consultation was basically “your son is fine, just give it a couple of months and see how he gets on. He is a late bloomer”.’
The family were then given a waiting time for a year to see a paediatrician on the NHS.
‘I couldn’t wait a year,’ Storm says.
Storm repeatedly raised her concerns with nurses during the three postnatal check-ins and felt she was being ‘fobbed off’ by GPs, who described Grayson as a ‘late bloomer’
Her sister Kristy, who lives in Portugal with her husband Peter, suggested a paediatric neurologist consultant in Lisbon.
The family had a meeting via FaceTime in 2023, in which the consultant raised concerns Grayson may be autistic and suggested several tests to be taken to a doctor in the UK.
‘I then got hold of my NHS GP to say I am really concerned for my son. I need help. These are the tests needed to check if anything might be going on,’ Storm explains.
‘They replied to say most of the tests are not available on the NHS.’
The family waited another year as they ‘had no other choice’, before finding a second medical opinion in the UK from a private paediatric neurologist in Bournemouth in July 2024.
‘I told him these are the tests that need to be done. He said absolutely, they do. We need to rule out Duchenne and Becker muscular dystrophy,’ Storm says
The family, who had never heard of DMD, were quoted £10,000 for the tests alone.
Storm adds: ‘We just couldn’t afford that.’
Storm and Peter compared Grayson’s development with their daugter Sky, who is three years older than him, and noticed a significant difference
This led to the Filitzs waiting until January 2025 to meet a specialist under the NHS, when they had the first round of genetic testing.
The tests came back negative after a six-month wait.
‘We had a sigh of relief. We were just really relieved that this is not the case, but she did say we need to do another round of genetic testing. They needed to investigate further,’ Storm says.
The family then received a phone call in September, saying ‘I am so sorry. Grayson has tested positive for a rare type of Duchenne muscular dystrophy’.
This left the family ‘devastated’.
‘I just collapsed on the floor because I didn’t know what else to do. I think I may have lost consciousness because I didn’t hear what the doctor said. I was just in shock,’ Storm recounts.
‘The doctor asked me to hand the phone to my husband, who was physically sick.
‘I was in a really bad way. I just couldn’t cope. I was trying very hard to cope while trying to shield Sky as much as we could.’
Yet that devastating moment also finally gave Storm her ‘answer’, confirming the worries she had for her son which she felt were being overlooked.
‘I thought finally we can do something. We can help him. I didn’t know how to help him before. I was frustrated the whole time because I didn’t know what to do,’ Storm says.
‘I was trying to be a mum to this little boy but he was struggling every single day. I saw his life flash in front of me as I was thinking he is not going to live past his teens because that is the typical lifespan. If he does, he will be in a wheelchair.’
Grayson has been to ‘consultation after consultation’ since he was diagnosed – and has recently been put on steroids, which he will be on for the rest of his life.
He is unable to be treated through the normal route of gene therapy due to a rare mutation of the DMD gene.
The only hope the family currently hold on to is a new drug, Elevidys, which is not available in the UK.
They were introduced to it by Storm’s sister Kirsty, who knew the scientist who developed a new drug, leaving them to need to fundraise to seek treatment in America.
The family need to raise £3.5million in an effort to slow down the condition.
When asked how Grayson is now, Storm says he ‘gets really frustrated’.
‘He only started speaking this year and is still struggling to form full sentences. He gets very frustrated and I can see it when he sees other children, because he is a very sociable child,’ Storm says.
‘He doesn’t keep to himself and loves to play with other kids. He’s a very gentle little soul.
‘We know he sees other children his age doing all these things he can’t do, and he gets really sad. And yet he tries to run and jump but he can’t.’
Storm adds: ‘All I want for him is to not have this and to not be going through this.’
