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Meet Evie Kate...

 

I am Evie Kate's mum, Abbi. Evie Kate was born on the 14th April 2013, and was a happy healthy baby. But at 8 months old Evie contracted Bronchiolitis RSV and was rushed into intensive care at Alder Hey. In the space of four days, Evie was induced into a coma, suffered a cardiac arrest and was put into an Oscillator. I was told Evie had a burst lung. For two weeks I sat at her bedside and hoped she would come round, but the doctors told me that would not happen adn asked me to turn off the ventilator and let evie go. But I refused. Three days later, Evie opened her eyes and brought herself out of the coma, everybody was amazed!

Over the next four weeks Evie fought off the RSV, and slowly we reduced sedation and medication. Doctors were really impressed, and as a mum I thought we were finally getting over this terrible time. Six weeks into intensive care, doctors tried to take Evie off the ventilator, but when they did we noticed that Evie struggled, and couldn't breathe for herself. This baffled the doctors. Over the next two days, Evie's limbs had stopped moving. The doctors at Alder Hey did scans, muscle biopsy's, nerve inductions and a full body scan. The scan showed that Evie's main breathing muscle (the diaphragm) was completely frozen. It was then that I was told Evie would never breathe for herself again. On the 6th February 2014, Evie Kate was diagnosed with SMARD Type 1 (Spinal Muscular Atrophy Respitory Distress). My world fell apart.

My baby's life had been ripped away from us all. I later found out that Evie's illness was genetic and that she was born with it, but it just never showed itself at birth. As you could imagine the next few weeks were the hardest of my life, having to sit with doctors and listen to the bad side of Evie's illness. They told us that she would never smile, talk, walk or have any type of quality of life. I then had to make the hardest decision of my life - whether to keep her breathing or turn off the machines. But I knew straight away what I was going to choose. I told doctors I wanted to keep Evie with me, by having a tracheostomy fitted and a portable ventilator. I wanted training sot hat I could take Evie Kate home where she belongs. The doctors agreed and on 30th May 2014 Evie had her tracky fitted.

Since that operation Evie has come on leaps and bounds. After six months on intensive care, we moved to HDU for a month, then moved down to transitional care uniot for 8 months, where I finished my training. I will admit I was terrified, but I knew I had to do it for Evie. In March 2015, Evie was discharged and we haven't looked back! Evie Kate has done fabulous and doctors who once doubted her are now amazed with how she is doing and how we as a family are coping. Evie has never had to go back to hospital since discharge and for a child living on a life support machine, this is a great achievement. Evie goes to school three times a week, goes out to the shops with me, and lives an amazing life. Evie is always smiling and is fully aware of what she wants. She even can now say words over her tracky and has regained slight movement back in her arm. Evie has a great personality and is very cheeky, funny and such a happy loving child. She does whatever any other child does.

Evie also has respite at Zoë's Place and to be honest, this is a godsend for me. The staff are all fantastic with Evie and her needs. They have her up dancing, singing and even going in the hydrotherapy pool, which is something Evie really enjoys. For me, it is great, because when I am run down or have a family emergency, Zoë's Place staff have taken Evie for me and put my mind at rest so I can focus on what I had to at that time. Zoë's Place gives me the break I need to recharge my batteries, something which is important because it is hard having a child on life support. Nobody could have told me what life would be like with a complex needs child, but as long as my Evie is smiling (which she always is), then I know I have done the right thing by her and it's the likes of staff at Zoë's Place who just make life a liot easier for a mum like myself.

There are lots of ways you can help to support our special babies, just like Evie Kate. Whether it is a making a donation, signing up to a fundraising event or coming up with fundraising ideas of your own, it will all help to make a huge difference. Find out how you can help by clicking below...

          

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