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Meet Jasper...


My name is Jeff, and me and my wife Gemma are mum & dad to Jasper, who is nearly 5. We also have his big brother Oscar, who is 6. Jasper was born with many conditions but has no real overall diagnosis as of yet. He suffers from Muscular Myopathy, Vocal Cord Paralysis (so he needs a tracheostomy) and breathing issue. He also needs a colostomy and he has a horseshoe kidney. Back in 2015, He was also diagnosed with Mitochondrial Disease.I used to really worry all the time, and I wanted to get all of the answers, but I have come to realise that what will be will be, and I need to concentrate on spending precious time with Jasper as much as I can. My experiences of the whole process has been lots of sadness, mixed in with sheer pride at how Jasper has battled and continues to battle on a daily basis to be the amazing little boy that he is.

As we live far away from our main hospital, we find support is very hard to come by. The process of caring for Jasper is the same, day in day out, and you find yourself stuck inside for large periods when he is unwell (which is a lot of the time). Family life is often separated into tow, my wife and Jasper and myself and our other son, Oscar (Or Vice Versa). This is because Jasper can struggle to partake in some activities that Oscar wants to do. My wife and I care for Jasper 24/7 including overnight care, so tiredness plays an immense role in our lives. As much as it is rewarding knowing you are looking after Jasper and seeing him develop, it comes with personal sacrifice, exhaustion and isolation.

We were referred to Zoë's Place by our long term ventilation nurse, Elaine, back in 2014. We were explicitly told that we would need a break and this is where Zoë's Place came in. We went to visit and were impressed with the staff's attitude and the commitment they had to their children, as well as their expertise in looking after children with all types of serious illness' and conditions. Jaspers favourite thing about Zoë's Place is the dedication the staff put into him and how loving they are at caring for him. He gets sung to and pandered to for the time he is there and he absolutely loves it. Even during the times he has had severe sleep issues, the staff do anything they can to reassure him and help him sleep. The care and respite we get from Zoë's Place is vital for us all to function as best as we can as a family, and that includes looking after Jasper and making sure we get some rest and don't ever get fully exhausted. The time we spend together with Oscar and the rest we get is vital for our mental health, and to keep us refreshed in dealing with all the challenges that a child like Jasper comes with. I cannot over emphasise the importance of the respite we get as a damily. And we know that Jasper is well cared for and in safe hands medically when he visits Zoë's Place and this is a massive relief to us.

There are lots of ways you can help to support our special babies, just like Jasper. 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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