Aya’s story

Born suffering from severe Meconium Aspiration Syndrome, Aya was treated at the Trevor Mann Baby Unit and Royal Alexandra Children's Hospital. Here is her story...

At The Rockinghorse Ball (which took place on Saturday 13 October), we were joined by parent and Rockinghorse supporter Johanna Zakiewicz, who delivered a touching and inspiring speech. She bravely addressed the room to explain how the ventilators at the Alex (provided by Rockinghorse in 2014) helped save the life of her daughter Aya Willow last year.

In her owns words, here is her story…

“My daughter Aya Willow was born on 16 July 2017 at the Princess Royal Hospital in Haywards Heath by an emergency C-section. Aya was born suffering from severe Meconium Aspiration Syndrome caused by a long, difficult labour where she inhaled meconium and couldn’t take her first breath unassisted.

She didn’t get the chance then to have her first cuddles with mummy and daddy or her first breast feed. Instead she was put into an induced coma for 10 days while doctors in three different hospitals battled to save her life.

When we tell people our story they say we were unlucky, but I know better – we are the lucky ones. Our daughter Aya is now a healthy one year old. She loves dogs and bananas and above all else her daddy. She chats away to herself while toddling around the house holding on to a precious frog finger puppet.

She is alive. She is thriving. She is here because of the actions of some very special people in the Princess Royal Hospital, the Trevor Mann Baby Unit in Brighton, Great Ormond Street and the Royal Alexandra Children’s Hospital. With the exception of Great Ormond Street, all of these units and hospitals are hugely supported by Rockinghorse and your contributions towards them.

While the physical impact on Aya is hard to spot now, the emotional impact on my husband Anton and myself is more obvious. One of the ways Anton chose to process his emotions last summer was to throw himself into raising money for Rockinghorse. While Aya was in intensive care in Great Ormond Street he saw posters asking for people to take part in challenges for the GOSH charity.

Rather than take part in one of those, he decided to create his own challenge, calling it The Aya Willow Challenge. He talked endlessly while we were in London about where, how and for whom this challenge would be organised, and I must admit to not really hearing much of it at the time.

However, in May this year he actually made it happen – we drove to Kendal which is by the Lake District, in a borrowed VW van where he then hiked up Scafell Pike. After that he road cycled from Kendal to Winchester where he then swapped to a mountain bike and cycled from Winchester to Devils Dyke, covering 360 miles in the space of just a week.

To date, the Aya Willow Challenge has raised over £7,700 including Gift Aid. We hope to raise £8,000 for Rockinghorse to buy another new ventilator for the High Dependency Unit at the Alex.

Aya spent four weeks on a ventilator in that unit and it breaks my heart to imagine the choices having to be made by the staff when they don’t have enough ventilators for all the children who need them. Rockinghorse wants to ensure that such choices never have to be made and we can help them achieve that goal by ensuring the Alex has all the ventilators it requires and deserves for the benefit of all our children – god forbid we ever need them.

I think every day how grateful I am to have the opportunity to watch Aya become the feisty, energetic little lady I already know she will be.  It’s not just the quality of care at the time I’m endlessly thankful for but also the investment in research and medical technology which happened in the 10 years previously.

Our ability to save these little lives has come so far and without the past donations into neonatal respiratory care I would not be telling you about my daughter Aya Willow.

Anton and I are endlessly grateful for the quality of care we received when Aya was born. We will never forget the kindness, compassion and friendship offered by everyone we came into contact with. We would like to thank Rockinghorse for what they do every day to help people like our family who are just one family in the thousands who will have been helped over the years.”

Our thanks to Johanna for sharing her story.