At Zoë’s Place, everything that we do is for the benefit of our special babies. So we thought we would introduce you to a few of them..
Hi, my name is Aimee and I am mum to two wonderful boys, Archie who is almost 6, and Stanley who is almost 3. A few weeks after Stanley was born in November 2012 he was rushed to Alder Hey Children’s hospital unable to breathe for himself; maintain his own body temperature and having seizures. He was diagnosed with having viral meningo-encephalitis. After defying the odds and pulling through Stanley was left with complex medical and care needs. He is now fed through a tube in his tummy as he is unable to swallow safely, has chronic inflammatory lung disease which requires daily chest physiotherapy and intermittent oxygen, as well as regular nebulisers and numerous antibiotics. As a result of his illness Stanley’s development is significantly delayed.
Looking after Stanley in the early days was almost impossible. It wasn’t until we started visiting Zoë’s Place that we could see any light at the end of the tunnel. Stanley started spending time at Zoë’s Place when he was 8 months old. It’s hard to find the words to describe what Zoë’s Place means to our family. They have been a life line to us all, not just in providing second to none care for Stanley, but also enabling Archie to spend some quality time with his Mummy and Daddy, which can be very difficult when Stanley is at home needing care around the clock. The respite allows us time to catch up on the everyday tasks that can often get missed as well as getting some much needed sleep! Zoë’s Place really is a ‘home from home’ and everyone is so welcoming that we really feel part of a large extended family. Thank you Zoë’s Place.
Meet Evie Kate...
I am Evie Kate’s mum, Abbi. Evie kate was born on the 14th April 2013 a happy healthy baby. At 8 months old Evie contracted bronulitus RSV and was rushed to intensive care at Alder Hey. In the space of four days, Evie was induced into a coma, suffered a cardiac arrest and was put onto a osilator. 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 and asked for me to turn of the ventilator and let Evie go, but I refused. Three days later Evie opened her eyes and brought herself out the coma, everybody was amazed!
In 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 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. In 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 (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 respitrey destress). 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 where 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. 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 and I wanted training so I could take Evie home where she belongs. The doctors agreed and on May 30th Evie had her tracky fitted.
Since that operation Evie has come on leaps and bounds. After 6 months on intensive care we moved to HDU for a month then moved down to the transitional care unit 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 days 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 fantastic with Evie and her needs. They have her up dancing, singing and even going in the hydro 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 in 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 of told me what life would be like with a complex needs child but as long as my Evie is smiling (wich she always is) 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 lot easier for a mum like myself.
Hi, this is Hago’s mum, Nina. Hago was born 26 weeks premature. He did so well and was discharged home from the Womens hospital within 3 months. But his breathing got noisier by the day and he constantly seemed out of breath, so I took him to Alder Hey Hospital. Scans were taken and they found that he was breathing through only 25% of his airways, as 75% was blocked by scars from the ventilator that saved his life at birth. We were told that in order for him to live, he needed to have a tracheostomy put in. He needs 24 hour care and I have no one to give me a little break to go out or to go to the shops.
Zoë’s Place has been our life saver. Hago loves the place and when I leave him there, I feel at peace because of the care he receives. I see new developments in him every time he comes back from Zoë’s Place. It also gives me the respite I need to do normal things like have a proper bath, regain my strength and also to spend some time with Hago’s 7 year old sister Sally. The benefit of Zoë’s Place to me and my child is enormous.
I want to say thank you very much to all the workers and supporters of Zoë’s Place. I don’t know what we would have done without Zoë’s Place and cannot find words to thank you enough. God bless you all for your love, care and generosity.