Support Evan's Journey: A Safe Home for a Brave Boy

Here we are doing something that we never, ever thought we'd have to do. It is with a huge amount of shame and embarrassment that we turn to friends, family and the public to ask for help.

Until recently, we were a "normal" family, living a simple but "normal" life with our two beautiful children, Amelie and Evan. We felt blessed beyond belief to have two happy and healthy children.

On the 8th of February 2025, Evan went to a laser tag birthday party with his friends. Within 15 minutes his left calf muscle went into cramp, rendering him unable to join in. Leg cramps were something he had experienced a lot of, which had always been explained away by medical professionals, as common in autistic children who walk on their toes.

At 9am the following morning, 15 hours after the initial onset, his calf was still in cramp. The longest cramp he'd ever had.

The next day on the 10th of February, we took Evan to see our wonderful GP, who completed a referral to physiotherapy and requested we book him in for a blood test.

On the 18th of February at 14:10, we took him for that very first blood test and treated him to a Domino's for dinner because he was so very brave.

Just under 7 hours later, I had a missed call. At 21:01 my phone rang again and on answering I was told that it was a doctor from the out of hours, 111 service, calling as the lab has fastracked Evan's results. His creatine and ALT levels were worryingly elevated and she told us that we needed to take him to A&E urgently.

As a mother, I was in a state of complete panic. Shaking so badly that I was unsafe to drive, dad (Tom) took Evan, after we'd got him out of bed and packed him a bag.

Throughout the night, Tom called and messaged frequently to keep me updated. He kept being asked if there were any muscle wasting conditions in our families. There weren't.

A&E booked Evan an appointment to have further bloods taken the following day on the 20th of February. They arrived home exhausted at 4am on the 19th of February.

At 12pm on the 19th of February I then received a further call from the on duty consultant pediatrician. He told me that he had been approached by his A&E colleague and that he needed to see both parents urgently. He asked that we went immediately, but we were unable to do this. We agreed to meet him on the 20th of February at the appointment made for Evan to have more bloods taken.

On our arrival the doctor was waiting for us, took us into a side room and examined Evan. He then asked a colleague to take Evan out to play, came back and said, "I'm really very sorry, what I'm about to say is very serious". He then told us that he believed our precious son had a condition called Duchenne Muscular Dystrophy. In the space of less than 48 hours, our lives had changed forever.

What followed was the worst kind of whirlwind. Evan was formally diagnosed with Duchenne Muscular Dystrophy on the 25th of March, at 7 years old, by Evelina Children's Hospital. DMD is a rare, genetic, life-limiting disease of the muscles which is progressive in nature.

Since that time our lives have completely changed. There are weekly appointments, daily physiotherapy, night splints, medical training to adminster crisis adrenaline, applications for various types of support. It often feels as though we are living in the worst kind of nightmare.

The latest devastating blow has come following a recent assessment of our home for potential adaptations to keep Evan safe and mobile. We were dealt with the news that the only home Evan has ever known, the house we bought when Evan was just 6 days old, somewhere we thought we'd live forever, will not be suitable for him. He will need things like a through floor lift, a wetroom, ceiling track hoist, power wheelchair and ventilator to name just a few pieces of equipment. The new build we live in has neither the space or structural integrity to accommodate our whole family and Evan's needs. We were also told that we need to limit his use of the stairs as he is already so unsafe and that we only have a couple of very short years before Evan is expected to become fully wheelchair bound. As Evan reaches his teenage years and early adulthood, he will become fully reliant on us for absolutely everything as the degeneration in his muscle accelerates.

The caveat, we can't afford a home that can be made suitable, despite being a two working parent household, with local prices of properties that could be adapted marketing for between £500-600,000.

We can't increase our working hours and miss precious time with our boy. We can't move to a cheaper area as we have our support networks, friends, children's school and medical teams locally. We are essentially stuck in a system that is broken and cannot offer any assistance.

It is our hope that, with your help, we will be able to acquire a small plot of land in order to build a small and simple home that will meet Evan's increasing needs.

We will then use the small amount of equity we have in our current home and a specialist mortgage to finance the build.

It is not in our nature to ask for help, we have always been able to support our children and give them the best we can.

To now feel like we are failing in providing a basic and safe home for our son is the most heartbreaking and soul destroying feeling.

We understand that the target amount is large and may seem excessive but we want to assure everyone who donates that these funds will be used for their intended purpose. Currently the cheapest available plot near us is on the market for £220,000!

We hope to also set up a legacy for Evan to do our best to help others who find themselves in the same position, to reduce some of the stress and one day bridge the gap in the cavern of affordable and accesible family homes.

We can't save our beautiful little boy from this awful, horrendous disease but we will try with everything we have to give him a safe and comfortable home, where he can have the best childhood we can give him.

We also know that times are tough for so many of you, so please, please do not donate if you cannot afford to. Sharing our story is enough!

We hope to hold some fundraising events for our community, so any offer of ideas or assistance with making any such event happen are also so, so gratefully received.

All our love and thanks, The Winter Family