The amazing Ella Bella

My husband Chris and I had always longed to start a family, and our joy knew no bounds when Hayden arrived after navigating through rounds of IVF. The pregnancy progressed smoothly, and Hayden, born three weeks early, brought immeasurable happiness with a straightforward birth. However, our world was shaken when a routine heel prick test revealed a positive result for Cystic Fibrosis. Undeterred by the diagnosis, we faced the news with unwavering positivity, placing a strong emphasis on maintaining a healthy lifestyle—a value we both held dear. Nine months later, we were overjoyed to discover that we had naturally conceived Ella. The pregnancy progressed smoothly until a final scan, disrupted by the challenges of COVID, unveiled a cyst in Ella's brain. Although professionals initially downplayed concerns, we endured an anxious wait for Ella's delivery to unveil the potential effects of the cyst. Ella's arrival via a successful water birth brought tears of joy, but soon, we faced another hurdle as she began experiencing seizures. After a month-long stay in the hospital following an unconfirmed diagnosis of bacterial meningitis, Ella was sent home. At three months old, Ella—a happy, giggly, typical baby—started to display unusual cramping movements that made her upset and distressed. We initially put it down to colic, but after noticing what we thought was a seizure, we rushed her to our local hospital.

Following more extensive tests at Southampton and Portsmouth hospitals and a three-week stay, Ella was diagnosed with infantile spasms, also known as West Syndrome, a type of catastrophic epileptic seizure. Ten months later, this was followed by a diagnosis of Aicardi syndrome. Aicardi syndrome is a rare genetic malformation syndrome characterized by the partial or complete absence of a key structure in the brain called the corpus callosum, the presence of retinal lacunes, and epileptic seizures in the form of infantile spasms. Other malformations of the brain and skeleton may also occur. The syndrome also includes intellectual disability. Ella, now a beautiful three-year-old, will face cognitive and mobility limitations for the rest of her life, requiring 100% care from her devoted parents. Hayden, the loving big brother, yearns for the day when Ella can join him in laughter and play, slowly realizing the harsh reality that this might never be possible.

I am a dedicated pharmacist, and Chris is a passionate personal trainer. We moved away from my family and friends in London to build a new community focused on a healthier lifestyle for the sake of our children. Our hope for a balanced life and family harmony is where you come in. We are creating a future for Ella and Hayden, but we need your support. Specialist equipment, house renovations—including bathroom modifications, lifts, hoists, slings, rails, ramps, and adaptive baths—are essential as Ella grows. Your contribution can make a profound impact on our special little family, which is brimming with hope and resourcefulness.

We both find it difficult to ask for help but recognize the necessity of establishing a home, routine, and community to ensure Ella leads the fullest and happiest life amidst the uncertainties she faces. Join us in providing the resources needed to make our dreams a reality. You have no idea how hard it is to ask! Every penny counts! This JustGiving page allows us, through the charity Tree of Hope, to raise vital funds for Ella’s needs and improve her quality of life.

Why through a charity? Well, it allows us to approach companies that can only donate to registered charities and ask for donations for Ella’s cause. We can apply for gift aid, and even with the small fee the charity takes, we receive more money per pound than if we did our own crowdfunding page, as we have in the past. The charity can also set up payments on our behalf for therapies, saving us vital time and hassle. Additionally, they can help negotiate VAT discounts from companies, which we will need when we begin the house modifications.

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 core operating costs. If we raise insufficient funds or surplus funds, the funds will be used, if appropriate, to fund support for our child’s needs in accordance with Tree of Hope’s charitable objectives. 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, any funds that cannot be used will be transferred to support the general charitable purposes of Tree of Hope.

If you have any questions at all, please do not hesitate to call the family support team at 01892 535525. Donating through JustGiving is simple, fast, and totally secure. Your details are safe with JustGiving—they'll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity, making it the most efficient way to donate—saving time and cutting costs for the charity.