Croydon: Parents' Bulgaria mission to treat baby Ted's devastating spinal muscular atrophy

A south London couple have given up their jobs to take their baby to Bulgaria for expensive treatment for a rare and life-threatening condition.

Five-month-old Ted Chadwick has been diagnosed with spinal muscular atrophy (SMA) Type 1, which causes paralysis, muscle weakness and progressive loss of movement. It affects just one in 10,000 people.

Parents Dani and Louis, from East Croydon, have set up a Gofundme page, to help with the cost of treatment and to raise awareness of the disease.

Many children diagnosed as young as Ted are not expected to live past two years - but the couple say his fighting spirit encourages them and medical staff. The couple worked in the superyacht industry, as a captain and as a steward, but their lives have been turned upside down after they began to care for him full time.

Risdiplam, sold under the brand name Evrysdi, is a new drug that has been approved to treat SMA patients like Ted. It is available on the NHS but Louis said they felt things were moving too slowly - "ventilator, he’s in an incubator".

Risdiplam comes at a market price of €10,000 for a month’s supply as Ted is treated in Bulgaria. Over £20,000 has been raised so far on the family's fundraising page. Ultimately, the aim is to fund a year's supply and raise awareness of the condition.

Louis said: “The Gofundme was something that initially I was reluctant to do, maybe a bit out of embarrassment, a bit out of could I fight it and did I have the necessity to do it. I’m lucky enough to have friends all over the world, and they said to me: ‘Look, people want to help. What can we send Ted?’

"And the truth is, he doesn’t need any more cuddly toys, he doesn’t need any more books. He needs physiotherapy, he needs access to the drugs. So in the end, I said if people want to donate something then that’s the better way to help.”

Louis added: “I do the night shifts with Ted, and I often sit there and watch these donations come in and see what is written and sit there and cry…[friends and strangers] have taken the time to read Ted’s story and donate.”

To donate, visit Ted Chadwick's fundraising page.

Read more about spinal muscular atrophy on the NHS website.