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 hospital following an unconfirmed diagnosis of bacterial meningitis Ella was sent home.  At 3 months old Ella, a happy giggly, typical baby started to display some unusual cramping movements that were making her very upset and quite distressed. We put it down to colic, but after noticing want we thought was a seizure we were blue lighted to our local hospital.  Following more extensive tests at Southampton and Portsmouth hospital and a three week stay in hospital, Ella was diagnosed with infantile spasms, also known as west syndrome, a type of catastrophic epileptic seizure.  10 months later, this was followed by a diagnosis of Aicardi syndrome.   Aicardi syndrome is a rare genetic malformation syndrome characterised 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. Myself, a dedicated pharmacist, and Chris, a passionate PT, moved away from my family and friends in London to build a new community focused on a healthier lifestyle essential for their 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, brimming with hope and resourcefulness. We both find it difficult to ask for help, but recognise 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 just giving page is to allow 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 take, we get more money per pound than doing our own crowdfunding page as we have in the past.They can also set up payments on our behalf to the therapies saving use vital time and hassle!!! They can also help negotiate vat discounts from companies, something we will need when we start to do the house modifications7.5% 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, 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 objects, then any funds that cannot be used will be transferred to be used for 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 on 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. So it's the most efficient way to donate - saving time and cutting costs for the charity.