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Priority funds mobility equipment for 7 disabled children
by Mark Borland
In March 2009 The Priority Trust made a grant of £30,596 to provide mobility equipment to seven children as requested by Newlife Foundation. As of the 15 September 2009 is that all equipment has been delivered. Priority and Newlife are working together to develop feedback on the impact the equipment is having on the children’s lives and this has been received from six of the seven families involved. More updates will follow as information is received, but here are the stories so far:
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.’
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