Our beautiful Everleigh is on quite the journey having been diagnosed with Atypical Teratoid Rhabdoid Tumor (ATRT), a malignant and very rare cancer, in 2023. She underwent complex spinal surgery and the most brutal chemotherapy and radiotherapy regime. The tumour resulted in her losing the most of the function in her right leg and she is now reliant on a wheelchair.

Ev continues to have MRI scans every three months under general anaesthetic. Each one takes around three hours, followed by an anxious week waiting for results. Those days are always tough, and we’re endlessly grateful for the support network that helps carry us through.

In late autumn, we learned that the life saving radiation Ev received has affected her eyesight, so she’s now rocking the cutest pair of pink glasses. She’ll be monitored for a while to see whether surgery might be needed. The silver lining is that her hearing appears to be unaffected, something we were really worried about, so that was a huge relief.

Physio has become a big part of our lives too. At her annual review, her lead neurophysiologist was genuinely stunned by how much movement she’s regained. He admitted he was delighted to have been proven wrong about his original prognosis.

And then this past week, Miss Ev (as her physio calls her) left us speechless again. Not only has she increased her toe movement, but she actually kicked the lower part of her “paralysed” leg. We’ve never felt more hopeful about her mobility.

With Spring not too far away, we started to think about how we could help keep her mobility improving and help both her independence and confidence to grow. Our thoughts are, they have a small garden that isn't really much good for Everleigh as there is a big step down into it from the back door, it's on a slope, the patio isn't even and there are a number of other issues. A lovely family friend recently asked if he could run the London Marathon to help raise money to adapt it, so we will be putting any money raised into creating a space that she can enjoy with her brother as independently as possible. Every penny of the money raised previously has made such a difference to our little girl with different bits of kit (like her tri-ride) and experiences that have lifted her so much.

This week brings more angst for us as after more than 2 years on her NG tube (which ensures she receives adequate fluids and nutrition), Ev had an operation last week to have a peg inserted into her stomach. She is classed as having a complex eating disorder and so we are hoping that by clearing her throat, it will have a positive impact. We will also be starting private dietary therapy at the end of this month to hopefully support her going forward. This will be a continuing journey, we aren’t expecting instant results and it’s a whole new system to learn how to feed her, but we’re optimistic.

We’ll continue to keep you updated on her progress.

If you’re able to share this link again, it would mean the world to us. Your kindness and support continue to lift us more than you know.

Thank you.