Sister who lost ‘kindest’ brother, 10, to rare condition fights to save others same pain

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When her brother died from a heart condition at the age of 10, Molly Schiller was determined to find out why.

Devastated Molly was 15 when she lost “kind and gentle” Max.

The sporty lad had hypertrophic cardiomyopathy (HCM), which affects one in 500 in the UK.

But his condition – thought to be caused by gene mutation – went undetected so Molly made it her mission to save other families from the pain she experienced.

Now, six years after Max’s death, she has helped pioneer new research to identify HCM’s genetic causes.

Molly’s work has been recorded in a 12,000-word dissertation for her Masters degree in biochemistry.

She says: “I really felt as if Max was with me on this journey as I did the research. I just want his legacy to live on. He was the kindest boy you could meet and I know he’d be proud of what I am doing in his name.

“His death changed the course of my life. I decided I had to find out what happened so I did two sciences and maths for A-Level and went on to study biochemistry at the University of Birmingham.

“I wanted to research why this is happening, ways to identify it at early stages and diagnose it in children.

“Dr Katja Gehmlich had set up a laboratory group at university to identify genetic causes of HCM. I explained my story and started to work with her.

“The research was to investigate a genetic variant in a protein recently associated with HCM.

“I was very proud that Max helped me do that.”

Molly says the research is at a “very early stage” but will “provide a basis for further investigation into the mechanism of this mutation and how it could be used to develop therapies to treat HCM”.

The 22-year-old adds: “Doing this was hugely personal. I felt as if I was bringing Max with me. I did feel very connected to Max.”

Molly has also told the world about Max. In a tweet last week, she wrote: “In 2015, my baby brother passed away at the age of 10 from a heart condition called hypertrophic cardiomyopathy.

“Six years later, I’ve just submitted my Masters dissertation researching the genetic causes of the same condition. I hope you’d be proud of me Max.”

Her message – which included a picture of her and Max – got more than 500,000 likes in a day.

Molly says her brother was a happy, vibrant and caring boy who loved football – especially Arsenal – basketball, all things Marvel and playing on his Xbox.

“We had a really close relationship,” she says. “He looked up to me and liked to listen to the same music. His favourite song was Pharrell Williams’ Happy. I can’t listen to it now without getting emotional.”

Holidays with parents Shira, 52, and Dave, 57, are also treasured memories. Molly says: “One of the last was in 2014 to Disney World in Florida, which he loved. He adored the rides. Max was so caring – he always wanted to help and he’d give his money to the homeless.

“His kindness was a quality beyond his years. He was a special boy.”

But 2014 was also when the family saw a change in Max. He tired easily and avoided sport as he felt unwell.

Tests were inconclusive and further checks were scheduled for 2015.

Molly says the family had a fabulous Christmas – but anguish lay around the corner.

She recalls: “On 8th January 2015 we woke up as a family of four. We went to work and school as usual, not knowing this was going to be the day that changed our lives for ever.

“We had dinner and Max went to bed and we wished him, ‘Goodnight, sweet dreams and love you and see you in the morning’ as we always did.

“My dad went up a few hours later to check on him and he had gone. It was a huge shock.

“Max’s passing left a huge void. He had a big turnout at his funeral as he was loved by so many people. We were told he had HCM – a thickening of the muscle wall of the heart. This is a genetic heart condition that does not always display symptoms and can be very difficult to detect in children.

“Tests did not pick this up as the physical symptoms can really only be detected after puberty.

“Our lives have been shattered because of this and the fact it was unable to be detected. In Max, the first real serious sign was his death.”

Molly and her parents, from Finchley, North London, had to undergo tests once it was established how Max died. “I still do this once a year to make sure I haven’t developed the same condition,” says Molly.

“It’s very scary but we’ve all been fine, so we think Max’s came from a genetic mutation he made by himself.

“We knew if Max’s condition had been detected, we could have done something to save him. He could have been put on Beta blockers or an internal defibrillator could have been implanted that gives a shock if the heart goes into abnormal rhythm.

“It spurred us into setting up a charity to fund research of the condition in children… to make sure another family didn’t have to go through the pain we did.”

Max’s Foundation has so far raised more than £500,000 to fund a research nurse and vital equipment at London’s Great Ormond Street Hospital.

The charity works to change how children are screened and treated and how they and families are supported.