Oshi's world
Donation protected
OUR VISION>>>>>>>>>>>>>>>>
Our vision is simply to create a space that accommodates all children and their families whether able bodied, wheelchair users, or have special specific needs. Giving them and their families a space where they can chill, or play, relax or chat. The aim would be to consider all the hurdles and eliminate the stress out of going to a coffee shop, or out for lunch with the family or friends, which might seem so daunting to many families with children with certain demands or needs. It would be a safe, friendly space; a meeting point or a party venue, even a place to have a hair cut or some reflexology whilst having a coffee and a sandwich. Our hope is to also create an environment where families can discuss and exchange information, an opportunity to meet others in a similar situation and exchange information about services, support networks or benefits.
The important aspects of this vision are that it is fully accessible. All areas will be accessible to wheel chairs, and space is therefore paramount. Hoists will be available, peapods, sensory equipment, fully kitted out changing facilities so that carers are not struggling with changing their children on the floor (as does happen frequently unfortunately). Outside space is also important, good disabled carparking facilities are essential judging by the amount of equipment many families have to carry around. Also, an outside play area and seating area for when the sun is shining.
The acoustics of the building and layout must be thought out very carefully. Many children with sensory impairment dislike big echoey spaces that create lots of noise and this should be taken into account. The need for a quiet area apart from the main area would be essential and a sensory room that could be enjoyed by all.
HOW THE WHOLE THING BEGAN…………………
Osian William Liddell was born full term on the 5th May 2015 to Anna and Huw, the proudest of parents. The pregnancy had been uneventful and they were so excited when he was born but it wasn’t long after that they discovered that baby Oshi was extremely unwell and he was promptly taken to the Neonatal Intensive care Unit. He remained in hospital for several months where every test under the sun was performed before the diagnosis of Aicardi-Gouitiere Syndrome was eventually confirmed.
Aicardi-Goutiere Syndrome is an extremely rare degenerative auto-immune disease which attacks every part of the body. Most children with AGS do not make it past early childhood and live a life with a range of complex medical needs. Oshi is the most wonderful little boy and Anna and Huw are fantastic parents who are creating a world for Oshi that ensures that he has the best possible life and outcomes. Their World as they once knew it no longer exists and their new World revolves around Oshi, administering all his medications, keeping him fed via a tube, making sure he has adequate oxygen, and most of all ensuring that he is happy. Dealing with all the complications that his condition brings is both challenging and rewarding.
Being the type of proactive parents that Anna and Huw are, and wanting the best for their son, they have joined groups and found sources of support along the way. They have benefitted from online groups where parents and carer’s of children with similar problems can share experiences, and have met families during their frequent stays in hospital. They have been blown away with the fundraising attempts of friends and families to raise funds to help Oshi and others like him with AGS and other rare conditions. They have accessed residential respite and were so impressed with the facilities and equipment within the establishment which enabled Oshi and his parents to relax in a comfortable environment where they could meet other people going through similar experiences and feel safe.
It was during a repite stay that Anna and Huw began wondering if there was a similar establishment where they could just turn up for a coffee or have some lunch that had disabled parking, wheelchair access and disabled toilet/changing facilities, even hoists and sensory equipment. They found, having discussed with many other families that the lack of facilities for disabled people in so many establishments, is the main reasons that many families with disabled children do not venture out and about and ultimately can feel isolated. And so, the cogs began turning and the realisation that there is a true need for an accessible and safe zone for all kinds of families to chill out, with opportunities for their children who are perhaps in wheelchairs with complex needs to play and for parents to meet, relax and mingle. Having previously raised over £10,000 in 4 days, the realisation that anything is possible is the driving force behind this idea. There is no stopping Anna and Huw and the extended family with the launch of Oshi’s World, which aims to raise awareness and funds to open an establishment that will meet the needs outlined. The impossible can be achieved when the main goal is to improve the lives of children like Oshi and their families.
Our vision is simply to create a space that accommodates all children and their families whether able bodied, wheelchair users, or have special specific needs. Giving them and their families a space where they can chill, or play, relax or chat. The aim would be to consider all the hurdles and eliminate the stress out of going to a coffee shop, or out for lunch with the family or friends, which might seem so daunting to many families with children with certain demands or needs. It would be a safe, friendly space; a meeting point or a party venue, even a place to have a hair cut or some reflexology whilst having a coffee and a sandwich. Our hope is to also create an environment where families can discuss and exchange information, an opportunity to meet others in a similar situation and exchange information about services, support networks or benefits.
The important aspects of this vision are that it is fully accessible. All areas will be accessible to wheel chairs, and space is therefore paramount. Hoists will be available, peapods, sensory equipment, fully kitted out changing facilities so that carers are not struggling with changing their children on the floor (as does happen frequently unfortunately). Outside space is also important, good disabled carparking facilities are essential judging by the amount of equipment many families have to carry around. Also, an outside play area and seating area for when the sun is shining.
The acoustics of the building and layout must be thought out very carefully. Many children with sensory impairment dislike big echoey spaces that create lots of noise and this should be taken into account. The need for a quiet area apart from the main area would be essential and a sensory room that could be enjoyed by all.
HOW THE WHOLE THING BEGAN…………………
Osian William Liddell was born full term on the 5th May 2015 to Anna and Huw, the proudest of parents. The pregnancy had been uneventful and they were so excited when he was born but it wasn’t long after that they discovered that baby Oshi was extremely unwell and he was promptly taken to the Neonatal Intensive care Unit. He remained in hospital for several months where every test under the sun was performed before the diagnosis of Aicardi-Gouitiere Syndrome was eventually confirmed.
Aicardi-Goutiere Syndrome is an extremely rare degenerative auto-immune disease which attacks every part of the body. Most children with AGS do not make it past early childhood and live a life with a range of complex medical needs. Oshi is the most wonderful little boy and Anna and Huw are fantastic parents who are creating a world for Oshi that ensures that he has the best possible life and outcomes. Their World as they once knew it no longer exists and their new World revolves around Oshi, administering all his medications, keeping him fed via a tube, making sure he has adequate oxygen, and most of all ensuring that he is happy. Dealing with all the complications that his condition brings is both challenging and rewarding.
Being the type of proactive parents that Anna and Huw are, and wanting the best for their son, they have joined groups and found sources of support along the way. They have benefitted from online groups where parents and carer’s of children with similar problems can share experiences, and have met families during their frequent stays in hospital. They have been blown away with the fundraising attempts of friends and families to raise funds to help Oshi and others like him with AGS and other rare conditions. They have accessed residential respite and were so impressed with the facilities and equipment within the establishment which enabled Oshi and his parents to relax in a comfortable environment where they could meet other people going through similar experiences and feel safe.
It was during a repite stay that Anna and Huw began wondering if there was a similar establishment where they could just turn up for a coffee or have some lunch that had disabled parking, wheelchair access and disabled toilet/changing facilities, even hoists and sensory equipment. They found, having discussed with many other families that the lack of facilities for disabled people in so many establishments, is the main reasons that many families with disabled children do not venture out and about and ultimately can feel isolated. And so, the cogs began turning and the realisation that there is a true need for an accessible and safe zone for all kinds of families to chill out, with opportunities for their children who are perhaps in wheelchairs with complex needs to play and for parents to meet, relax and mingle. Having previously raised over £10,000 in 4 days, the realisation that anything is possible is the driving force behind this idea. There is no stopping Anna and Huw and the extended family with the launch of Oshi’s World, which aims to raise awareness and funds to open an establishment that will meet the needs outlined. The impossible can be achieved when the main goal is to improve the lives of children like Oshi and their families.
Organizer
Helen Murphy
Organizer
