“Her smile makes us smile, her laugh is infectious, her heart is pure, and above all, we love that she is our daughter.”

We love you, Millie.

Our little princess, Millie, was born on 27th April 2012. She was just perfect and completed our family alongside her older brother, Taylor. For the first six months of Millie’s life, she was the most content, relaxed little girl. She started babbling and showed such an incredible personality.

Soon after, it became obvious that Millie was struggling to meet her milestones. She never rolled over, struggled to sit independently, and suffered from really erratic sleeping patterns. As the months progressed, she experienced further delays in every aspect of her motor and speech skills. Whilst we worried that she was delayed, we were often reassured that she would soon catch up, as every child is different.

Millie started to display signs of struggling to cope with the world; it became a terrifying place for her, and she could only really deal with being at home. Since around eighteen months, Millie has been through so much medically, including brain scans, blood tests, genetic testing, urine tests, and many paediatrician appointments. But there was still no answer.

Millie continued her intense struggle. To our despair, in November 2015, after being in a distressed state for many months, Millie suffered her first seizure. From this point, she was admitted to hospital and spent nearly a month there. It was during this time that she was diagnosed with Rett Syndrome.

It was explained that Rett Syndrome is an awful neurological, life-limiting disorder that primarily affects girls. In Millie’s case, it was a completely sporadic occurrence.

Millie will never talk but has been so determined with her walking; we were elated when she started to walk at 2 ½ years old. She went from bottom-shuffling to walking and has never stopped since. That is the most heartbreaking thing—over time, Millie will lose the purposeful movement of her hands, she will lose the ability to walk, and she will need to be tube-fed. Seizures and medication are now part of her life.

But throughout every struggle she has ever experienced, Millie has managed to smile. She has the most infectious smile and personality. She is endearing, cheeky, beautiful, and mischievous. She captures the heart of everyone she meets and inspires us every day.

Millie’s eyes are the gateway to her soul, and she communicates through her eyes. Millie loves wandering around and babbling. We are committed to keeping her walking for as long as possible, keeping her strong, and looking into ways to help her communicate.

We are looking to raise money for physiotherapy and hydrotherapy to try and prolong her ability to walk, music therapy to try and help her find enjoyment in life, and occupational therapy to help her get the equipment she needs. As time goes on and she loses purposeful hand movements and the ability to walk, we also want to make sure she has access to Eye-Gaze equipment so she has the opportunity to communicate with us.

Most of you will know how much Millie enjoys being outside and being independent enough to get there herself. Since moving home, we have installed disabled-access patio doors. We plan to raise money to provide her with a level, safe surface to walk out onto. This area will be designed so that she can fully enjoy her time outside safely. We plan to make this area interactive and fun, tailored to her individual needs.

Independence is so incredibly important for Millie, and her constant desire to walk around will only support her mobility for as long as possible. She will then be able to access this space in her chair at a later date.

We are fiercely passionate about doing our best for our little girl and want to ensure we help her with treatments, therapies, and equipment that will give her the best quality of life possible.

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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.