WALKING FOR PEN — Summer 2025 (August 3rd)

Join us to walk, raise awareness, and celebrate Penelope!

On Sunday 3rd August, we will be joining Diane Dixon who has been completing costal walks throughout the summer to raise funds for PEN and increase awareness of MLD, we sincerely appreciate her time, effort, and support.

We’re inviting all friends, family, and supporters to come together for a very special event: WALKING FOR PEN — a day to walk in support of our beautiful Penelope, raise awareness of Metachromatic Leukodystrophy (MLD), and help fund equipment and make meaningful memories.

About Penelope

Penelope has been diagnosed with Metachromatic Leukodystrophy (MLD) — a rare, life-limiting genetic condition that devastates the nervous system. MLD is caused by a deficiency of an essential enzyme (Arylsulfatase-A), which leads to a toxic build-up that damages the protective covering (myelin) around the nerves. Without this protection, the brain and body can no longer function as they should.

Penelope has the most aggressive form: late-infantile MLD. After a period of normal development, children like Pen begin to lose previously acquired skills. Penelope is now three years old, and in recent months we’ve seen rapid and heart-breaking changes — she’s lost her ability to crawl, roll, and sit without support. She can no longer grip or use her hands independently, and now receives all her nutrition through a feeding tube. We have seen an increase in muscle stiffness, seizures, and painful dystonia.

There is no cure. And tragically, Penelope isn’t eligible for gene therapy — the only potential life-saving treatment — as the disease has already caused too much nerve damage.

We don’t know how long we’ll have with her. What we do know is that we want to make every moment count.

❤️ Why We’re Walking ❤️

Despite everything, Penelope continues to light up our lives with her sassy looks, strength, and the most beautiful smiles. Her giggles — though rarer now — are still the best sound in the world.

Our mission is simple:

To keep Penelope as comfortable, joyful, and loved as possible.

Specialist equipment makes a world of difference — but is incredibly expensive, and we've had to cover more ourselves than we expected. Your donations help us provide Pen with the comfort, and quality of life she deserves.

We’re also walking to raise awareness of MLD. Most people have never heard of it — yet early diagnosis can save lives. With more awareness and MLD added to new-born screening program, other families could be spared this heartbreak.

Join Us – 3rd August (location to be confirmed)

“WALKING FOR PEN” is a day to come together — to walk, laugh, and celebrate Penelope and our incredibly supportive family and friends.

Pen’s proud Nana, Sue Parkin, is making beautiful hand-crafted tote goodie bags for everyone who joins us, in exchange for a £10 donation. If you can’t make it on the day, any shares, donations, or messages of support are so appreciated.

Every Step Matters

Your love, support, and generosity are helping us stay strong — and helping Penelope live her best possible life, filled with love, comfort, and dignity.

Thank you for walking with us — in person, in spirit, or online.