My little hero Harry

We’re reaching out to share our journey and the challenges we face as we navigate life with degenerative conditions. Both my son, Harry, and I are living with progressive health issues that are impacting every part of our lives. As we continue to face these struggles, we are trying to prepare for a future where we have the support we need to get through each day.

Over the past few years, our lives have changed drastically due to our health. I was first diagnosed with hypermobile Ehlers Danlos syndrome (hEDS), a condition that affects my joints, heart, internal organs and pretty much my entire body. My health challenges have made it difficult for me to care for myself and for Harry as I once did. Then came Harry’s diagnosis of (DMD) muscular dystrophy, and on testing me, I have the same gene mutation and diagnosed as a manifesting carrier. This added another layer of complexity to our lives. DMD is progressive and lifelimiting. As Harry’s muscles, heart and respiratory system will weaken over time and he will require more support, mobility aids, and therapies to help him maintain as much independence as possible. Due to my manifesting carrier status, I face similar difficulties. There is no cure, and we know that as the condition progresses, the assistance we require will increase.

At the moment, we’re doing this alone. After leaving an abusive relationship 3 years ago, we spent time in a refuge after losing our home and all the money we had invested into it before rebuilding our lives thanks to me being able to maintain work at that time. We are trying to make our way in the world with limited resources and support. We are currently living in a rented home that isn’t suited to our evolving needs, and while we don’t have control over the space; we know that moving to a more accessible place will eventually be necessary. But even more pressing than the need for a new home are the daily challenges of living with chronic and degenerative conditions. As time goes on, the help we need will only grow. We’re starting now to try to make sure that when those needs increase, we are in a position to manage them with the dignity and stability that we deserve.

We’re asking for your support, not just to manage the immediate challenges we face, but to give us the opportunity to plan for a future where we can continue to care for ourselves and one another. The funds raised here will help us cover the practical needs of our daily lives and any additional resources that Harry and I require. As we face the realities of living with degenerative conditions, having the right support will help us maintain our independence and quality of life.

Your support will allow us to focus on our health and future without the constant worry of how we will manage. By helping us, you’re not just supporting us financially, you’re helping us continue to face our challenges with resilience, knowing that we are not alone.

If you’re unable to contribute, sharing our story and spreading the word would mean just as much to us. The more people who know about our journey, the greater the chance that we can find the support we need. Thank you for taking the time to read our story. Your kindness and generosity are deeply appreciated, and we are grateful for every bit of support.