Hello, friends, family and anyone who may be hearing our story for the first time,

We have a gorgeous little boy called Jude. He is funny, loving and incredibly caring. When Jude was just 3 months old, he was diagnosed with Duchenne Muscular Dystrophy. It was heartbreaking and something we still try to come to terms with now. Some days you can forget for a little while and it just feels like you're a normal family. Other days, you're hit with fear and sadness for the life your little ones been dealt.

When we fell pregnant with Jude, we imagined all the ordinary things. His first steps, running around at the park, playing sports, going on holidays or having little adventures. We had the easiest pregnancy, we were in such a happy little bubble, thinking about all the normal things you think about when you're having a baby.

Then everything changed. Jude was born not breathing and we thought that was possibly the worst thing we'd ever experience. When we finally got to take him home, we thought we could ease into our baby bubble but, at just 6 weeks old, Jude became incredibly unwell. He was turning blue and was fighting for oxygen and we genuinely thought we were about to lose him.

We thought once we'd got through that, that things would settle down but then we were told that Jude's bloods were abnormal. After weeks of testing and waiting for results, we were finally told that our little boy had DMD.

DMD is a rare genetic and life-limiting condition that causes muscles to become weaker and waste away over time. As Jude grows, everyday things will become increasingly difficult. Jude can't walk yet, but we hope one day this could be a possibility for him. Even if he does, he will likely struggle with things like stairs and keeping up with other children and it is something he will eventually lose again. Over time, DMD also affects the heart, lungs and swallowing muscles, and Jude will become increasingly dependent on us. There is also a higher chance of ASD, global development and speech delays, all things we are currently experiencing with Jude. DMD means Jude will gradually lose abilities and independence that most of us take for granted, which is what makes DMD so heartbreaking.

I can't really describe that pain of being told your child has a genetic disease. It felt like everything we'd imagined for our little boy had been taken away and there was no one to blame and no one who could fix it. As a parent, all you want is the happiest and healthiest life for your child and being told that you will likely outlive them is something we still struggle to put into words.

We're slowly finding our way into a world we never imagined we'd be a in. There is still a lot of uncertainty and fear but more than anything, we just want to give Jude a home where he can be safe, comfortable, happy and as independent as possible.

As Jude gets older, his needs are changing. Currently we can just about carry him around but as he continues to get bigger we will need the space/storage and adaptations to help us get him around the house. Our current home simply isn't going to work for him long term. There isn't the space, storage or accessibility he needs and we don't want to wait until we're struggling before trying to make it work for all of us.

We looked at every option we could and some options weren't available to use and so we eventually found a home that gives us the space and potential to adapt it. However, making a house work for a child with a progressive disability is expensive and it's something we never imagined we'd have to plan for and financially manage.

We have tried to explore the support available to us, but because of our circumstances, including Connors income, we have found that we don't qualify for much of the financial or housing support we had hoped might be available to us. So, we had no option but to look on the open market and find something that covered Jude's needs as much as possible.

When we were looking for a house, we had to think about things most families don't have to think about door widths, stairs, bathrooms, room sizes, wheelchair turning spaces, where equipment could go and whether we could actually make the house work for Jude as he grows... and that's why we're asking for some help.

Our new home needs quite a lot of work to make it suitable for Jude. Some of the things we need to do are: converting the garage into an accessible bedroom and wet room, making space for his equipment and somewhere to do physio, widening doorways, putting hard floors throughout, knocking down a solid wall to make our kitchen accessible, adding ramps and a new accessible front door, and eventually adding specialist equipment such as an electric changing bed and ceiling hoist.

The Disabled Facilities Grant will help us, and we're incredibly grateful for it but it won't cover much of this. We have managed to save but disability equipment and adaptations are expensive and there are things we simply can't afford to do on our own.

We know how lucky we are to have a home to move into. We want to give Jude a home where he can feel comfortable, safe, cared for with dignity and feel included. Somewhere he can grow up surrounded by his family without accessibility constantly being another barrier in his life.

Any help, no matter how big or small, will go towards making that possible for him

We know times are hard for lots of people and so if you can't donate, please share our story. That is just as important to us. It helps us reach people we wouldn't otherwise reach.

Thank you for taking the time to read Jude's story.

With love,

Jess and Connor 💚

If you have a moment, we would also love for you to read “Welcome to Holland”

A therapist shared this poem with me after Jude's diagnosis, and it helped me put into words some of what it can feel like to be told your child is disabled.

https://www.emilyperlkingsley.com/welcome-to-holland