Thanks for taking the time to visit my JustGiving page.

Over 8 dates, between April and October this year, I’ll be taking on a massive personal challenge to raise money for UNIQUE (Rare Chromosome Disorder Support Group) by aiming to hike a total of 200 miles!

My "Just Keep Walking" challenge will have me trekking across Cumbria, Derbyshire, Lancashire, and Yorkshire, tackling some seriously long hikes along the way (I’m definitely nervous about a few of them!) especially after spending the latter half of last year with a knee injury!

The Challenges:

13 April - Ullswater Way - 21 miles

27 April - Lancashire 3 Towers - 32 miles

24 May - Edale Skyline - 21 miles

21 June - Witton Weavers Way - 34 miles

TBC July - Winter Hill circular - 16 miles

13/14 Sept - Calderdale Way - 51 miles

4 Oct - Yorkshire 3 Peaks - 25 miles

All but one of these treks will be navigated and supported by the amazing Abigail’s Trails Ltd who I’m so incredibly happy I found. The support Abi and my fellow walkers in the group have shown me has been incredible!

Why walking?

There are two main reasons why I’m walking.

The first one ties into why I’m raising money for UNIQUE. As many of you know, my amazing boy, Ellis, was born with Cantu Syndrome. Cantu Syndrome is extremely rare, with fewer than 200 reported cases worldwide.

Cantu Syndrome happens because of a change (mutation) on chromosome 12 in the ABCC9 or KCNJ8 genes, which are involved in how cells communicate. These genes control potassium channels that help cells function, especially in the heart, blood vessels, and brain. But in Cantu Syndrome, these potassium channels become overactive, which leads to a bunch of daily problems like:

- Blood vessels over-relaxing, causing blood pressure issues and exhaustion

- Heart abnormalities, like enlarged heart chambers or irregular rhythms

- Developmental delays and behavioural differences, due to effects on brain function with many like Ellis being diagnosed with Autism.

There are also a number of varying issues that Cantu can cause, such as feeding issues which in Ellis’s case has led to needing a Mic-key button feeding tube.

One of the big challenges of Cantu Syndrome is muscle weakness (Myopathy), which makes it harder for Ellis to build strength and endurance, especially for walking. Many people with Cantu Syndrome also have hypermobile joints, which can cause more mobility issues. Over time, the combination of weak muscles and joint problems makes walking long distances really tough. Long walks are something I love, but I don’t know if I’ll ever get to enjoy them with Ellis the way I hoped. So, I’m walking for him….taking on the miles he can’t!

The second reason I’m walking is for ME. I believe strongly in the importance of taking care of yourself so you can take care of others. Any parent will tell you that raising kids is hard work, but when you add in the extra challenges that come with a child who has additional needs or health concerns, it can feel overwhelming.

For me, hiking is a powerful tool for improving mental health and practicing self-care. Being a parent of a child with additional needs, especially one with a rare chromosome disorder, can be exhausting. Between doctor appointments, advocating for your child, and handling their emotional and physical needs, it’s easy to get burnt out, stressed, and anxious. I want to show others in similar situations that it’s okay to take time for yourself, get outdoors, and focus on your own health too.

Why Raise Money For UNIQUE?

I’ve chosen to raise money for UNIQUE (Rare Chromosome Disorder Support Group) because of how much they helped me understand Ellis's condition after his diagnosis. When you have a child with such a rare syndrome, there’s almost no information available to guide you. I spent hours and hours trying to make sense of research papers and medical journals full of words I couldn’t pronounce, let alone understand! Then I found rarechromo.org, the website run by UNIQUE, and it completely changed everything. They helped break down all the complicated info and provided resources specifically for parents like me—worried, stressed-out, and in need of clear answers.

UNIQUE provides vital support for families dealing with rare chromosome disorders, which are often isolating and difficult, especially since there's limited awareness even in the medical community. They offer emotional, practical, and social support to families who might feel alone in facing these challenges. Thanks to their resources, I’ve already connected with three other families in the UK who are going through similar experiences.

Fundraising for UNIQUE can support and encourage research into rare chromosome disorders. This research is crucial for finding new treatments, therapies, and potentially cures for these conditions. UNIQUE has provided me with specialized information about Ellis’s specific condition, which has been invaluable in helping us plan for the future. Now, I want to help them continue this amazing support for families worldwide who also need it.

When things feel tough....Just keep walking!