Evie's CDKL5 Journey

Evie's Journey: Help Fund Her Physio and Treatment

Updated - 8th March 2023

Thank you so much for taking the time to visit our JustGiving page and learn more about our daughter, Evie.

A Year of Challenges and Progress

It’s been a challenging time for us, with COVID-19 still lingering in our minds and impacting Evie’s vulnerable health. Despite these challenges, we’re incredibly proud of Evie’s progress.

In May last year, Evie finally had her long-awaited spinal surgery to correct her scoliosis. The surgery was a major step, and though it came with risks, we’re thrilled to report that her recovery is going well. We’ve had positive follow-up appointments at Great Ormond Street Hospital, and Evie continues to heal beautifully. We will share some before-and-after pictures below to show you just how far she’s come!

Looking ahead, we’re preparing for Evie’s next surgery: a hip surgery to correct her left hip, which is moving out of its socket and causing her pain. This surgery is essential for her, and we’re hopeful that it will improve her comfort and mobility.

The Ongoing Battle with Seizures

Evie continues to face the challenge of daily seizures, which are difficult to control. We ride this emotional rollercoaster every day, but we remain determined to give Evie the best life possible.

In the meantime, we’re looking to get Evie back into her weekly physiotherapy sessions, which are essential for her development and progress. However, physiotherapy and the necessary equipment come at a cost, and that’s where your support can make a huge difference.

Evie’s Physio Story: A Long and Rewarding Journey

Typically, when children grow, they reach milestones like holding their head up, rolling over, sitting, standing, and walking. These milestones are exciting for any parent. But for children like Evie, these simple functions don’t come easily, and physiotherapy plays a vital role in helping them achieve these goals.

Evie’s physiotherapy journey has been a long and rewarding one. While her progress may seem small to some, we see huge improvements, particularly in her core strength. We are so proud of her and all the hard work she puts in during each session. Evie is now able to sit with the help of cushions, and although she gets tired and flops forward, we see remarkable progress.

Evie’s physiotherapy sessions are not just about recovery; they’re about teaching her body how to function better and making her muscles more aware of her movements. We’re so grateful to the dedicated team at Kids Physio Works, who use fun and interactive techniques like the TheraSuit, Spider Therapy, and Core Strengthening exercises.

The TheraSuit is a special suit that helps Evie feel the position of her joints, ensuring her muscles are engaged while practicing movements like sitting and standing.

Spider Therapy uses a metal framework with elastic bungees, supporting Evie’s weight and allowing her to practice standing and moving her body in a more controlled way.

Core Strengthening exercises help Evie improve her posture, reduce tightness, and increase her overall strength and confidence.

These sessions are incredibly valuable, and with your support, we can ensure that Evie continues to receive the therapy she needs to reach her full potential.

How You Can Help

We’re raising funds to cover the cost of Evie’s weekly physiotherapy sessions for the next three years, as well as a two-week intensive block during the summer holidays. This will allow Evie to continue building strength, improving her mobility, and getting closer to her goals.

Every donation, no matter the amount, will make a huge difference to Evie’s life. We are eternally grateful for your generosity and support, and we promise that Evie will keep working hard in every session to show you just what she can achieve.

Thank you from the bottom of our hearts for helping us give Evie the opportunity and platform to reach her goals.

With love and gratitude,

Anna and the family xx

7.5% of all donations to Tree of Hope in relation to this appeal will be allocated to the general charitable purposes of Tree of Hope to cover our core operating costs.

If we raise insufficient funds, or surplus funds, then the funds will be used, if appropriate, to fund support for our child’s needs in accordance with Tree of Hope’s charitable objects. If in those circumstances we are unable to use all or part of the funds for the benefit of our child in accordance with Tree of Hope’s charitable objectives, then any funds that cannot be used will be transferred to be used for the general charitable purposes of Tree of Hope.