Ava Walden

Ava is a beautiful little girl with a lot of challenges against her, but her smile can light up a room.

When you meet Ava, you can see the determination in her and the fight she has. There have been many times when she could have given up and left us, but she is a warrior and surprises many doctors with her will to live.

Ava was born on 16th September 2016, and there was no cause for concern. We were sent home to enjoy our little family bubble. As a new mother, I had no idea what milestones meant.

Ava had an undiagnosed milk allergy, which meant her skin would blister, weep, and just look so raw and sore, which was heartbreaking to see her in pain. Once we got her allergy results and got her skin under control, everything else became apparent—that she wasn't the “normal" neurotypical baby.

The early signs started with her lack of head control, then her visual tracking wasn't there, and she showed little interest in toys or reaching out for them.

I took Ava to the GP and voiced my concerns. The doctor sent me straight to our local hospital, where we were told she was brain-damaged and blind and most likely didn’t know who I was. As you can imagine, this was heartbreaking for me and my husband.

Ava was referred to Great Ormond Street Hospital, where she went through multiple tests such as MRIs, EEGs, blood tests, and genetic testing. However, Ava’s results came back negative. In 2017, we were told that Ava has a Syndrome Without A Name (SWAN). My first question, which no parent should have to ask, was about her life expectancy. We were told they don't believe she has a regressive disorder, so we just keep pushing forward.

What we do know is that Ava has a collection of conditions. She has Global Developmental Delay with the mental age of a 16-month-old. She is non-verbal but communicates through sounds and expressions. Ava has Hypotonia, which means she has low muscle tone, mainly in her core and neck, which means she is unable to sit or walk. But she doesn't let this stop her. She rolls from side to side on her mat around the room, which she enjoys.

Ava is registered blind but has pockets of vision, meaning she will move her head to get what little sight she has. She loves lights, and shiny mirrors make her the happiest. She has a nighttime ventilator (BIPAP) as her muscles are weak. When she sleeps, her throat muscles relax more than usual, so this helps push positive pressure to her lungs.

Ava’s biggest threat is catching the common cold, as she doesn’t have the ability to cough. Because of this, she has been admitted to Paediatric Intensive Care on life support 6 times. The admissions can sometimes last up to 7 weeks, which can be very traumatic, but as mentioned, she has a fight for life.

We are fundraising to give Ava the best life possible and to keep her strong as much as physically possible.

£125 will fund one private physio session, which she has 3 times a month and will need for the rest of her life.

£50 - £100 will fund private hydrotherapy, which is pool-based therapy.

£500 will fund a changing bench.

£1,800 will fund a mobile hoist.

£3,000 will fund a wheelchair designed for beach and countryside walks, making it more comfortable.

£8,000 will fund eye gaze equipment, which will help Ava communicate with the world.

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.