Ivy Elizabeth entered the world at 00.08 on Boxing Day 2018 – our late Christmas present and the best one yet. She was so perfect and we were so thrilled to be a family of three. Once home, Ivy attracted lots of visitors, all bringing such lovely gifts with them. We joked that she was the most loved baby and we felt as if all our dreams had come true.

However Ivy failed to meet some of her developmental milestones. She was unable to lift her head and her arms and leg movements were weaker than other babies we knew. She had always struggled with feeding and her breathing began to sound noisier. At a paediatric appointment at a local hospital, the doctor explained to us that something was wrong and he needed to run tests. It was during these initial blood tests that Ivy had her first respiratory episode, making her turn slightly blue and needing oxygen and she was admitted into hospital. The same thing was to happen 5 days later, only worse and this time Ivy was put on a ventilator and moved by ambulance to the Paediatric Intensive Care Unit at John Radcliffe Hospital in Oxford. During the next 8 days all the doctors and nurses on intensive care looked after Ivy with such compassion and kindness. They warmed her up when she was cold, they found her new toys to play with, they even had cheeky cuddles. Our beautiful girl was hooked up to so many machines but we were able to focus on her as the nurses took care of all the ‘bleeping’. I think Ivy’s smile made them want to look after her more – even in this poorly state Ivy bought happiness to so many.

The team around us at Oxford not only looked after Ivy, they also cared for us; her mummy and daddy. They checked we had eaten breakfast, fought to get us a room in Ronald McDonald housing and got us appointments with our Psychologist and the Chaplain. It was in one of these meetings that the Chaplain said “think of the gifts Ivy has given you”. We realised that without ever saying a word, Ivy had given so much to us.

We were told that Ivy had tested positive for a genetic condition known as Spinal Muscular Atrophy Type 1 (SMA1). This horrible and fatal condition meant Ivy would slowly lose the ability to use all the muscles in her body. Things started to fit into place. The lack of movement, the difficulty feeding, the breathing – her muscles were failing her.

As you can imagine our dreams had turned to nightmares – we knew our beautiful baby was very poorly but we didn’t know how long we would have with her. We were determined to spend as much time with her, reading stories and singing to her. Ivy made progress in PICU, even moving to the High Dependency Unit on a ‘scuba’ mask when the doctors took her breathing tube out. Sadly Ivy deteriorated quite quickly and we had to make the heartbreaking decision to remove the life support.

The end was very peaceful and Ivy fell asleep for the last time in our arms on 10th May 2019. She was 4 months old. As she was held we promised her that so much good was to come from her life.

The doctors and nurses lived every minute with us, they laughed while we laughed and cried when we cried. We knew that we wanted to try to repay the love and empathy shown to us during this most horrendous of times.

From this Ivy’s Gifts was formed. We want people to have fun and do good in her memory, whether that’s holding a cake sale, climbing a mountain or just giving some of your hard earned cash. The money we raise will go to Oxford Hospitals Charity who can use the money on equipment, research, improving staff welfare…the list is endless. Please help in whatever way you can – a little can go a long way.

We want to keep giving to the little girl that gave us so much!

For more information please visit www.ivysgifts.co.uk