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 where she could have given up and left us but she is a warrior and surprises many doctors with her want for life.

Ava was born 16th September 2016 there was no cause for concern and 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 heart breaking to see her in pain. Once we got her allergy result 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 her reaching out or interest in toys.

I took Ava to the GP and I voiced my concern the doctor sent me straight to our local hospital who told us she was brain damaged and blind and most likely didn't know who I was. As can imagine this was heartbreaking for me and my husband. 

Ava was referred to Great Ormond Street Hospital who put her through multiple testing such as MRI’s, EEG’s, Blood test, Genetic testing but Ava’s results came back negative. We were told in 2017 that Ava has a Syndrome Without A Name (SWAN).  My first question which no parent should have to ask was her life expectancy which we have been told they don't believe she has a regressive disorder so we just keep pushing upwards.

What we do have is a collection of conditions, she has Global Development 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 rolling from side to side on her mat around the room which she enjoys.

Ava is registered blind but has pockets of vision which means she will move her head to get what little sight she has. She loves lights and shiny mirrors makes her the happiest. She has a night time ventilator ( BIPAP) as her muscles are weak when she sleeps her throat muscles relax more than the normal so this help push positive pressure to her lungs.

Ava biggest threat is catching the common cold as she doesn't have to ability to cough and because of this she been admitted into Paediatric Intensive care on life support 6 times the admissions can sometimes be up to 7 weeks which can be very traumatic but she 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 physio for the rest of her life

£50 - £100 will fund a private hydro therapy which is a pool based therapy

£500 will find a changing bench 

£1,800 will fund a mobile hoist

£3,000 will fund a wheelchair that is designed to go on the beach and countryside walks more comfortably

£8,000 will fund an eyegaze equipment which will help Ava communicate with the world