This commitment is even more inspiring given that Anna, who has cerebral palsy, needs a powered wheelchair to provide her with independent mobility.  Her previous power chair, provided through local contacts would break down frequently, often leaving her stuck for several hours until her parents could arrange to pick her up. In March, Priority, working with Newlife funded a new powered wheelchair that will provide Anna with the independence she needs to get on with her life.

The new wheelchair is slimmer and better fitted to Anna. “It’s letting me do what I want to do and now I can chase the children at school!”

This September Anna is due to start her degree course in teacher training at Canterbury University and is very excited about going. However her local authority has still not confirmed that they will fund the carer that she obviously needs to be away from home and live independently. As her Mother says “the fraught experience of trying to establish how Anna can access support at university has served to show huge gaps between what the government promotes and how that is delivered at any local level.” Despite this Anna is confident that things will work out, but seems calmly resigned to the fact that there will always be a struggle when it comes to accessing the correct support that she needs.

This reaction comes from many frustrating experiences. At 4 years old, when applying for a wheelchair from the local authority, her mother was told “but she’s terribly young, does she really need one?”. Later, after an application for a wheelchair had been with the local authority for 18 months, they were told it had been ‘lost’.

More recently, when deciding which university to attend, Anna came away from one feeling that she just wasn’t welcome. They told me the course was “very stressful, obviously trying to put me off”. Canterbury however seems to be different, with good facilities to support Anna’s needs. But this simply highlights the different levels of service provision around the UK.

Anna’s mother expects this to continue: “Children’s services, despite all their own weaknesses, do at least have the impetus of statutory requirements (children have to go to school, must be cared for etc). Once you come under the ‘Transition’ team it seems you become a whole different ‘problem”.

The new wheelchair is allowing Anna to look to the future. Her Mother is delighted:

“Your donation, via Newlife, has made a real difference to us and the wheelchair makes it possible, in the vital, practical sense, for Anna to achieve her ambitions.”

It also meant that Anna could to go to this summer’s Glastonbury festival, where she saw many of her favourite bands, including Stevie Wonder. Fortunately the good weather meant there was little of the infamous Glastonbury mud to get stuck in!

Imaan is 5 year old girl living in the west of England  who has a diagnosis of global developmental delay, microcephaly and epilepsy. She has profound learning disabilities and is unable to communicate verbally. She has disturbed sleep patterns and episodes of hyperactivity. Imaan and her family applied for an all-terrain buggy to enable the family to go out together and give them greater independence.

Feedback received suggests the buggy is already proving beneficial.  The basic buggy provided by the occupational therapists could only be used indoors and on well-paved surfaces. The new buggy that The Priority Trust grant funded helps Imaan travel over and access areas that were previously inaccessible.

Imaan is getting greater enjoyment from life because of the new equipment.  She enjoys rolling around on grass, which the family does not have at home, and which she would previously have found difficult to access with the old equipment.  The new buggy helps her to get to parks and woodland that she would have struggled to get to before.

Libby is a 2 years old who lives in South Wales and has a diagnosis of Spina-Bifida and Hydrocephalus, Talipes and Bilateral hip dislocation. Libby has some independent mobility as she can commando crawl and sit independently. But she is unable and unlikely to walk. Libby is also incontinent and requires catheterisation twice a day. Libby’s speech is developing; she has a few words but is not yet stringing sentences together.

The family applied for a powered wheelchair to enable Libby to become more independent and access nursery and school playgrounds and enable her to join in family outings. The sit to stand facility on the chair would allow Libby to access different surface heights and participate in more activities, which will help her overall development and education.

The equipment was delivered on the 24th June. Libby’s father has said that the powered wheelchair has exceeded their expectations and her physiotherapists have confirmed that it meets all of Libby’s needs.

He went on to say that the transformation in Libby’s behaviour has been incredible. There has been a noticeable increase in her confidence and in her communication.  The support that the new equipment provides has helped to reduce her pain, which in turn has increased her mobility. She is more able to get to her physiotherapist appointments, which in turn has meant that the physiotherapy team can help teach Libby how to use the wheelchair to make the most out of it.

Jack lives in Scotland, is 4 years old and has a diagnosis of Cerebral Palsy. He was born prematurely at 29 weeks gestation. Jack has no learning or communication difficulties and attends a mainstream school with full time one to one support. Jack is able to crawl on the floor but he is unable to weight bear or walk without specialist equipment and requires constant supervision as he has very poor balance. He uses a specialist buggy for his mobility needs outdoors and requires assistance with his care needs and with activities of daily living.

Jack is a full time attendant propelled manual wheelchair user when outdoors and due to the arrival of Jack’s baby brother, his Mother required a double buggy to be able to take both children out. Their standard double buggy was not comfortable for Jack and did not provide the additional postural support he needs.

Jack’s mother has confirmed the buggy has made a significant difference to the family’s everyday life and for external access, the buggy meets Jack’s needs perfectly.  The double buggy has helped tremendously with transporting both Jack and his younger brother. The postural support is helping Jack to relax and reduce the pressure on his joints, decreasing the amount of pain he experiences. This, along with his ability to relax his stomach muscles due to the postural supports, has increased the quality of his life dramatically. The buggy has also substantially reduced the strain on his mother’s lower back.

David is 11 years old and lives in Scotland. He was born pre-term at 30 weeks gestation and has a diagnosis of cerebral palsy. David does have reduced muscle tone but following intensive therapy is growing in strength and is now able to independently transfer. David has no communication or learning difficulties and attends a mainstream school with full time support and is registered as visually impaired. David is a full time manual wheelchair user and he is able to self propel on appropriate surfaces and over short distances.

The family applied to Newlife for a powered wheelchair as he tires easily and this is impacting on his independence as he cannot keep up with his peers. David would benefit from a powered wheelchair as he is due to start secondary school and currently would require assistance to mobilise around the campus. A powered wheelchair would also allow David to socialise in an age appropriate way outside of the home.

This wheelchair with modified seating was delivered in early August.  David’s Mother states that the new chair has been wonderful for his independence and for helping him to get around school.  They are happy with the equipment and have confirmed that it has made a significant difference to David’s life. The new chair has helped with David’s back pain because it has a much better support, which means that David no longer has to lie down during the day and can now access the school campus and keep up with his friends all day long.

David’s mother is ‘absolutely happy’ with the equipment and the service and wishes to thank all concerned for the help given and the wonderful work that we do.

Alex is 7 years old, lives in Surrey and has a diagnosis of severe autism. He is unable to communicate verbally and uses a PECs system to make his wishes known and does not have any difficulties with his hearing or vision. Alex is able to walk independently but has no sense of danger. Alex displays challenging and self-harming behaviour; he regularly physically attacks and injures other members of the family. Alex attends a SEN school full time and requires a specialist buggy when away from home to ensure his safety as with no awareness of danger, he will run into roads. Alex is physically strong and when distressed will often refuse to walk. Provision of the buggy will allow mum to take Alex out without worrying about his safety.

Update: This equipment has been delivered and we are currently seeking feedback from the family on the beneficial impact this equipment has brought.

Alphonso is 9 years old and lives in London. He was clinically diagnosed with infantile epilepsy which has led to his severe developmental delay. Alphonso is also prone to frequent and repeated infections due to a blood disorder. Alphonso attends a special needs school for his physical and learning difficulties. He has no speech and communicates by making noises or eye pointing. Alphonso is able to weight bear and can assist with transfers but he is unable to walk without specialist equipment and assistance and is a full time manual wheelchair user requiring attendant assistance. The application to Newlife was for an all terrain buggy which will enable Alphonso and his family to go out and access different places and terrains. The lightweight buggy will also provide Alphonso with the postural support and positioning that he requires  and can be easily transported in the family car.

The family is very happy with the buggy which although very lightweight, is strong enough to bear Alfonso’s weight, which the previous equipment did not.  The family appreciate its’ lightness, which makes it easy to use and transport. The footrest had to be adjusted but the family were able to do that easily.  Alfonso is now able to take part in family activities in the countryside, which was not often possible before, and all-in-all, since the arrival of the all-terrain buggy, his quality of life has definitely increased. The family commented that the application process was very simple and the staff  were very friendly and helpful.

Lottie is 3 years old and lives in south west England. She has a diagnosis of Spinal Muscular Atrophy Type 2. Lottie was able to walk independently until the age of 18 months when her condition deteriorated and she is now dependent on a specialist buggy for all of her mobility needs and is unable to move about independently. Lottie does not have any learning difficulties or communication difficulties and attends a main stream nursery. The Family applied for a powered wheelchair with high low facility. This equipment would allow Lottie to interact and develop in an age appropriate way and access the same surfaces / heights as her able bodied peers. Lottie is due to start school in the coming months and this equipment will significantly improve her life experiences at this crucial developmental stage.

The equipment was delivered in late July and Lottie’s Mother confirms that they are very happy with the wheelchair – ‘it is wonderful’.  She states that Lottie is a different person, is enjoying everything and is really happy.

The wheelchair has made a significant difference to Lottie’s life, she is now able to participate with her peers at nursery and she shows her friends what her wheelchair can do. She can now keep up with them on the playground and is equally involved in all indoor and outdoor activities. Lottie’s Mother is more than happy to help in any way she can and is going to forward some photos by email.

‘Everybody was so kind and helpful. Everything was so quick and easy.’

In September 2008, when the Occupational Therapist from Dragonmobility first met Keira at the request of Keira’s OT, she was shy, withdrawn and clinging. She had undergone a lot of medical interventions in her short life, and at the age of 2 had a natural tendency to cry and ask for cuddles when presented with anything new.

Keira has an undiagnosed neuromuscular condition which causes severe weakness, particularly in her lower body, and has caused dislocation of hips and knees. Her parents spent a lot of time carrying her around, and as she approached her third birthday and was beginning to grow fast, this was becoming increasingly difficult.

Despite her problems, her parents and OT knew that she would be capable of taking more control of her life, given the right tools. Priority together with a number of charities and the local wheelchair service, clubbed together to raise the £18,000 needed to provide the family with a SnapDragon powerchair with customised seating and five years technical support.

Because Keira’s need will change as she grows, Dragonmobility will provide whatever revisions to seating and service for the powerbase are necessary to maintain the personal mobility she becomes accustomed to and relies on.

Priority, with generous support from the Presidents Club was able to donate the final £6,000 necessary to get Keira the chair, and on 18^th March 2009, Keira visited the Dragonmobility workshop in Cambridge to collect her very own pink SnapDragon.

Keira had begun to realise a little of what the SnapDragon could do for her, but was still nervous, and still used to asking one of her parents to carry her, instead of making her own way. Her parents were also beginning to realise what kind of challenge having a 3year old in a powerchair, with all the issue of safety and discipline would bring.

A visit to Keira’s home only four weeks later, showed a total transformation. She was out in the garden, dashing about on the grass. She was moving so naturally in her SnapDragon that it seemed like an extension of her. When Mark, her father, offered a cup of tea, and went into the house, she was quite happy to stay and entertain on her own. She played like any three year old, and when her father came back out, she played with him in and out of the spaces under her sister’s trampoline, and took us to meet their neighbour.

The neighbour said she was a different child since getting the chair; talking and playing and mixing like any other child, instead of being the shy, trapped little soul she once was.

Mark reported that it only took Keira a week to become used to her SnapDragon. She had great fun with her friends having an Easter-egg hunt on Easter Monday, whereas before she would have been sitting on the sidelines.

And when she starts school in the village with all her able-bodied friends she will be equipped to learn and grow and develop her abilities and potential without being limited by passivity and lack of confidence. The one thing Keira has now is plenty of confidence!

*All names have been changed to protect  the individuals concerned

We will be following the progress these children as they receive their equipment and start to enjoy the freedom and change it will bringto their lives.

Once again Priority would like to thank all those who have generously supported our work as we look forward to funding more equipment going forward.

This is a huge milestone for Priority that we intend to build on, supporting more disabled children as effectively as we can. The grant of £52,750 has been made to Whizz-Kidz with whom we are working in partnership and all the funds will be spent on the mobility equipment.

*All names have been changed to protect  the individuals concerned

We will be keeping in touch with Whizz-Kidz to track progress with the delivery of the equipment and also receive feedback on the impact it has on the lives of these young people.

Priority would like to thank all those who have supported our development so far and have helped us to bring positive change to the lives of these children and young people.