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Jasper, from Windsor, was born prematurely at 29 weeks old on 17th December 2014. He was born by emergency C-Section after doctors noticed complications after a routine checkup and spent the first 99 days of his life in hospital. At around two and half months old, the hospital noticed he wasn’t developing at the usual rate, and he also had low-set ears, didn’t cry very much and held his thumbs. They did a genetic test, which was when they discovered he has a very rare chromosome disorder called Trisomy 9 Mosaicism.

Jasper’s condition is so rare that only around 150-200 people worldwide have it, and only 1 in 4 are boys. As it is so rare, there is very little information about it, and what is available is mainly produced by other parents. As a result, not many doctors or geneticists have come across it either, which was quite alarming for Jasper’s family when they first found out. Over the years, they have experienced a huge learning curve and guessing game about what the condition means for Jasper as he grows up. 

Weighing just 970g when he was born, Jasper spent over three months in the hospital incubator. Then, during the following year, he spent time in and out of hospital again with bronchiolitis, chest infections and other complications. At eight months old, he had a respiratory arrest at home and ended up in the John Radcliffe Hospital, where he stayed for around six weeks. It is still unclear if Jasper’s complications were/are a result of his rare diagnosis or being born prematurely.  

Support from Helen & Douglas House

Jasper’s family were struggling, so their community nurse started to talk about respite care and the support available for him and his family. Having a newborn child is already hard, but when they have added complications, it can be really tough.  

“He wasn’t able to turn himself. He was tubefed and was on more medications than he is now. He was also sick a lot, so was being fed very slowly on a pump up to 22 hours a day. We had to sleep with him and check on him every 20 minutes, moving his position, giving medication, or altering his oxygen flow. You were just up and down sort of all night, and when I look back now, it was like we were on autopilot, but we just kept going.” Christina, Jasper’s Mum

This was when his mum Christina, as his full-time carer, was told about Helen & Douglas House children’s hospice. She was advised how it could be a place where she could get a break and Jasper could be cared for in a safe environment. She had heard of the hospice before, having lived in Oxford previously, but didn’t know if they cared for adults or children. So, when Jasper’s family learned it was somewhere they could go to get help, it meant so much to them. After having little direction for Jasper’s care due to the rarity of his condition, they were relieved to finally have someone say they could help them from both an emotional and practical position. The hospital did a great job, but they just didn’t have the time to work out what care they could deliver due to the rare nature of his condition. 

“We had never considered that there was somewhere like Helen & Douglas House out there to help us and provide respite care. It was amazing to learn they existed and now I find it difficult to put into words quite how much the hospice means to us. At a really tough time, to be told that there is someone who can help and just to give you that break you need…it really meant a lot.” 

Jasper came for his first day visit to the hospice around February 2016, then his first respite stay in May 2016. Since then, apart from during covid, he regularly visits the hospice for supportive stays. Sometimes, his family will stay in one of our on-site flats. This allows them to spend time together while being close to Jasper, as well as giving them the space to get some respite from his care.

“When Jasper comes to Helen & Douglas House, he has a whale of a time. From the moment we go through the door his little legs start going because he’s so excited to be there. He loves keeping busy and enjoys all the activities they offer, from the warm water of the therapy pool to getting messy in the arts and crafts area.”  

Jasper’s condition is a lot more stable today than it was for the first 3-4 years of his life, and thankfully, he experiences fewer complications and illnesses. He no longer needs checking every 20 minutes at night, and the sleep apnoea he experienced is less severe than it was before. Despite this, he still has limited mobility, is non-verbal and is tube-fed with a blended diet. He has recently started to learn to walk, but not yet unaided for very long. In May 2021, he had his tonsils and adenoids removed, which left him extremely poorly. Eventually, he recovered, and since then, illnesses haven’t affected him as much as they did, which means he can start to grow better in his body. Jasper was also born with an enlarged head, which can cause balance issues. The hope is that now he has the nutrition he needs, the size of his body will catch up, and he will continue to grow and get stronger.  

Jasper’s life expectancy is completely unknown. There is various evidence to show that those with the same condition have reached the age of 42, but others have only lived until their 20s and some only to the age of four or five. When he was a baby, doctors didn’t think he would survive, but now, aged nine, Jasper is getting stronger, and he and his family will continue to make memories together during their regular supportive stays at Helen & Douglas House. 

“Nobody will ever really know what it means to have Helen & Douglas House there until they’re put in the situation when they need them. Their support means the world to us. Life is hard with a child like Jasper, so coming to the hospice gives us a little snippet of a normal life and the chance to be able to do things together that I think a lot of people take for granted. Our lives would be enormously difficult without Helen & Douglas House.” 

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