News & Forthcoming Events
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Last Update: 18.01.21 During 2020, the details of our work are: 2 Grants completed to date Our Activity in Recent Years:
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£1,954.79 |
Analysis of the above figures shows that in a typical year just over 50% of our grants are classified as "Small" ie £1,000 and under, and require 20% to 25% of our grant funding. This shows the importance of small targeted grants to help families. We have analysed the figures for the last 4 years and we have found consistent results. Many of the bigger items of equipment exceed the £1,000 threshold, even with the various discounts we are able to negotiate, which shows that significant help can often be provided at a relatively low cost.
News about the Charity:
With completion of the 55th Grant of 2020 we reached the milestone of £900,000 raised and granted without taking a single penny from the Charity in administration costs. Everything donated was used for the benefit of the children. While we hope to target our next big milestone by 2021, we are increasingly limited by the funding we can raise, especially with the impact of COVID 19 on the suspension of so many fundraising activities. We shall be more dependent than ever on the wonderful help we receive from our supporters as we start 2021 with grants completed to date of £921,000.
We never anticipated the rate of growth we have seen, or the amount already granted when we started. Sadly this clearly highlights how serious the problems are in this area and how much help is needed.
Donations:
There are full details on our Donation Page of the various methods of making a donation to us, as well as the Everyclick Donation button (centre of the Donation Page), which allows an online donation to be made quickly by Credit or Debit card.
We would also like to highlight the help that can be given by commission payments on purchases (at no cost to the purchaser - just nominate the Charity) eg Amazon Smile, Give as You Live, and from recycling ink cartridges - Recycle for Charity. Details of how to help, at no cost, are on the Donation page of this website.
Current and Future Events in 2021:
We can only hope that many of the groups that collect for us are once again able to meet, when we can begin to relax the lockdown rules. We have already received £117.43 from a collection at Pens Meadow School to start the year off.
News of Recent Grants Made:
16.01.21 We started the year with two grants:
£395.00 for a 2.5 year old born with multiple limb deficits of her left arm/leg, and is unable to stand, walk or crawl. As she is under 3 years old she is not eligible for a frame, so to provide some mobility and to strengthen her muscles prior to a prosthesis for her left leg, a Firefly Scoot was proposed. This will help her to develop some mobility and we agreed to fully fund.
£1,559.79 for a 5 year old with a diagnosis of cerebral palsy spastic quadriplegia, and is dependent on her parents for all aspects of her care including feeding, with her mother acting as a full time carer. She has special postural seating to support her correctly at a table or desk, but she has no other suitable support seating to hold her both safely and comfortably when relaxing. A Ppod Bean seat was proposed, and having purchased a number of these previously for similar cases, we agreed to fully fund.
24.12.20 We completed the year with ywo further Small Grants:
£200.00 for a 12.5 year old She has a diagnosis of cerebral palsy spastic quadriplegia together with a range of other medical problems. She needed a new special needs pushchair to replace the broken unit she had been using for some years. We have helped her on a number of occasions, so knew the background to her problems, and with the family having raised some funding, we agreed to provide the balance required of £200.00 for the purchase to proceed.
20.12.20 We have completed four more grants recently in the final run up to Christmas:
£2,167.00 for an 11 year old with a diagnosis of Autism Spectrum Disorder, speech and cognitive limitations and severe sleep problems. His sleep was improved by use of a Urzone low sensory bed, but his repetitive behaviour causes damage and a modification was proposed to secure it to a low bed.
£181.10 for a 3 year old He has a diagnosis of Down's Syndrome and development delay. He required a tray system to fit his special needs pushchair, and we agreed to fund the full cost.
05.12.20 We have completed 2 further grants :
£1,400.00 for a 1.5 year old with a diagnosis of a life limiting condition called NKH, and with severe development delay, low muscle tone and epilepsy. She needed a special buggy for transport and Wheelchair Services agreed to partially fund with a Personal Wheelchair Budget (PWB) of £1,733.29. With the family having raised a small amount, we agreed to fund the outstanding balance of £1,400.00 to allow the purchase to proceed.
£853.00 for a 5 year old with a diagnosis of global development delay and learning difficulties. He was unable to access his current seating system at home and needed a fully supportive system which would hold him securely in place and allow him to access the table top. After assessment, a suitable system was found and we agreed to fully fund.
28.11.20 We completed 3 further grants this week:
£900.00 for a 15 year old with a diagnosis of right hemiplegic cerebral palsy GMFCS level 2, which affects his balance and mobility. A special exercise trike was proposed to help to develop his leg muscles, improve his coordination, and help his mobility. With the family able to make a contribution to the cost we agreed to fund the balance.
£507.03 for an 8 month old baby with an undiagnosed neurological condition, who suffers severe seizures, and is classed as having a life limiting condition. A fully supportive car seat was urgently needed to be able to safely transport him, and we agreed to fully fund after an assessment by a supplier used regularly, and from whom we receive a discount.
£1140.76 for a 12 year old with a wide range of medical problems and a recent diagnosis of possible Mitochondrial disease. She has significant scoliosis, but could not tolerate an operation due to her general health. She needed special postural support to try to prevent her scoliosis from deteriorating, and help her general comfort as she needs to use ceiling hoists to change her position. Her Paediatric Physiotherapist proposed a special support cushion system, and we agreed to fully fund.
22.11.20 We have completed 3 further grants:
£922.20 for a 4 year old with a diagnosis of diplegic cerebral palsy, and is currently wheelchair dependent, although he is learning to walk. He is currently under consideration for a selective dorsal rhizotomy to further help. Proposal was to fund a special exercise trike to help to develop his leg strength, and with the family having raised some funding, we agreed to fund the balance.
£205.00 for a 3 year old with a diagnosis of cerebral palsy, and Wheelchair Services recently provided a seating system for him but will only fund certain basic items. He also requires a tray unit for his specific needs and we agreed to fund the extra cost.
£1,102.40 for a 13 year old with a diagnosis of Downs Syndrome and has other medical problems. She struggles with her balance and a special exercise trike was proposed to help to develop her leg muscles, general fitness, and improve her general mobility, which we agreed to fund.
13.11.20 We completed a grant of £514.88 for a magnet harness for a 6 year old with partial foetal alcohol syndrome and a range of other medical problems. It was urgently needed to hold him securely when being transported as he was releasing himself from his existing harness and presenting a hazard to himself, the driver and any other occupants.
10.11.20 We completed a grant of £361.52 for a Diono Radian 5 car seat for a one year old with spinal muscular atrophy type 1, and significant breathing problems which mean that he was unable to tolerate a standard car seat. After a full assessment the Diono seat was specified and we agreed to fully fund.
08.11.20 We have completed three further grants despite starting our second lockdown in England:
£2,241.00 for a 7 year old with a diagnosis of Lissencephaly (a life limiting brain condition) and a range of other problems. He is unable to walk and requires a fully supportive and secure car seat for transport. After a full assessment, he was found to require a more expensive type of seat to the type normally funded, due to his condition, and we agreed to fully fund.
£1,222.05 for a 3 year old with a diagnosis of cerebral palsy and has who been provided with an R82 Xpanda chair to hold him in the correct position when seated. However, he is unable to tolerate this for other than short periods, and needs another more comfortable secure seating system which will provide some support when not using the Xpanda chair. The request was for a Ppod bean seat and we agreed to fully fund.
£462.64 for a 1 year old with a diagnosis of a degenrative genetic disorder which exhibits with uncontrollable seizures, global development delay, and serious hypotonia. He is unable to support his head or trunk and needed a suitable special car seat to hold him securely. He was assessed at the Regional Driving Assessment Centre (RDAC) and a suitable seat was selected, which we agreed to fully fund.
05.11.20 We completed two further grants during the week:
£905.00 for a 15 year old with a diagnosis of cerebral palsy who underwent a Selective Dorsal Rhizotomy to improve his movement. During lockdown he had access to specialised exercise equipment which helped to improve his fitness and also improved his walking. On return to school, this facility was lost and we were asked to help with funding an item of exercise equipment to help to maintain the mobility that he has gained, which we agreed to fully fund.
£1,442.60 for a 10 year old with a diagnosis of Angelman Syndrome, which presents as inability to verbally communicate, learning difficulties, some mobility limitations and epileptic seizures. Six years ago we funded a special exercise trike for her, which we are advised has been a great help with exercise and muscle development, but she has now outgrown it, and the trike has been donated by the family to another child with the same syndrome. We were asked to help with funding a new trike fitted with the additional equipment and support she will require, and we agreed to fully fund. The final price was reduced by our agreed discount with the supplier.
29.10.20 We completed a grant of £1,840.00 for two brothers with a diagnosis of WOREE Syndrome which is a severe form of epilepsy characterized by absence of language development, lack of ability to walk, and early onset drug resistant seizures , sight problems and a prognosis of a high likelihood of premature death. They already have a lot of specialised equipment at home including a fixed ceiling track hoist in the bedroom. However, as they grow, there are increasing needs for hoist assistance all over the house, and funding for a foldable, easy to move, portable hoist was requested, which we agreed to fully fund.
The grant on the 29.10.20 completed 740 grants made since we started, and reached the milestone of £900,000 granted with zero administration costs.
News about the Charity:
With completion of the 55th Grant of 2020 we reached the milestone of £900,000 raised and granted without taking a single penny from the Charity in administration costs. Everything donated was used for the benefit of the children. While we hope to target our next big milestone by 2021, we are increasingly limited by the funding we can raise, especially with the impact of COVID 19 on the suspension of so many fundraising activities. We shall be more dependent than ever on the wonderful help we receive from our supporters as we start 2021 with grants completed to date of £921,000.
We never anticipated the rate of growth we have seen, or the amount already granted when we started. Sadly this clearly highlights how serious the problems are in this area and how much help is needed.
Donations:
There are full details on our Donation Page of the various methods of making a donation to us, as well as the Everyclick Donation button (centre of the Donation Page), which allows an online donation to be made quickly by Credit or Debit card.
We would also like to highlight the help that can be given by commission payments on purchases (at no cost to the purchaser - just nominate the Charity) eg Amazon Smile, Give as You Live, and from recycling ink cartridges - Recycle for Charity. Details of how to help, at no cost, are on the Donation page of this website.
Current and Future Events in 2021:
We can only hope that many of the groups that collect for us are once again able to meet, when we can begin to relax the lockdown rules. We have already received £117.43 from a collection at Pens Meadow School to start the year off.
News of Recent Grants Made:
16.01.21 We started the year with two grants:
£395.00 for a 2.5 year old born with multiple limb deficits of her left arm/leg, and is unable to stand, walk or crawl. As she is under 3 years old she is not eligible for a frame, so to provide some mobility and to strengthen her muscles prior to a prosthesis for her left leg, a Firefly Scoot was proposed. This will help her to develop some mobility and we agreed to fully fund.
£1,559.79 for a 5 year old with a diagnosis of cerebral palsy spastic quadriplegia, and is dependent on her parents for all aspects of her care including feeding, with her mother acting as a full time carer. She has special postural seating to support her correctly at a table or desk, but she has no other suitable support seating to hold her both safely and comfortably when relaxing. A Ppod Bean seat was proposed, and having purchased a number of these previously for similar cases, we agreed to fully fund.
24.12.20 We completed the year with ywo further Small Grants:
£200.00 for a 12.5 year old She has a diagnosis of cerebral palsy spastic quadriplegia together with a range of other medical problems. She needed a new special needs pushchair to replace the broken unit she had been using for some years. We have helped her on a number of occasions, so knew the background to her problems, and with the family having raised some funding, we agreed to provide the balance required of £200.00 for the purchase to proceed.
20.12.20 We have completed four more grants recently in the final run up to Christmas:
£2,167.00 for an 11 year old with a diagnosis of Autism Spectrum Disorder, speech and cognitive limitations and severe sleep problems. His sleep was improved by use of a Urzone low sensory bed, but his repetitive behaviour causes damage and a modification was proposed to secure it to a low bed.
£181.10 for a 3 year old He has a diagnosis of Down's Syndrome and development delay. He required a tray system to fit his special needs pushchair, and we agreed to fund the full cost.
05.12.20 We have completed 2 further grants :
£1,400.00 for a 1.5 year old with a diagnosis of a life limiting condition called NKH, and with severe development delay, low muscle tone and epilepsy. She needed a special buggy for transport and Wheelchair Services agreed to partially fund with a Personal Wheelchair Budget (PWB) of £1,733.29. With the family having raised a small amount, we agreed to fund the outstanding balance of £1,400.00 to allow the purchase to proceed.
£853.00 for a 5 year old with a diagnosis of global development delay and learning difficulties. He was unable to access his current seating system at home and needed a fully supportive system which would hold him securely in place and allow him to access the table top. After assessment, a suitable system was found and we agreed to fully fund.
28.11.20 We completed 3 further grants this week:
£900.00 for a 15 year old with a diagnosis of right hemiplegic cerebral palsy GMFCS level 2, which affects his balance and mobility. A special exercise trike was proposed to help to develop his leg muscles, improve his coordination, and help his mobility. With the family able to make a contribution to the cost we agreed to fund the balance.
£507.03 for an 8 month old baby with an undiagnosed neurological condition, who suffers severe seizures, and is classed as having a life limiting condition. A fully supportive car seat was urgently needed to be able to safely transport him, and we agreed to fully fund after an assessment by a supplier used regularly, and from whom we receive a discount.
£1140.76 for a 12 year old with a wide range of medical problems and a recent diagnosis of possible Mitochondrial disease. She has significant scoliosis, but could not tolerate an operation due to her general health. She needed special postural support to try to prevent her scoliosis from deteriorating, and help her general comfort as she needs to use ceiling hoists to change her position. Her Paediatric Physiotherapist proposed a special support cushion system, and we agreed to fully fund.
22.11.20 We have completed 3 further grants:
£922.20 for a 4 year old with a diagnosis of diplegic cerebral palsy, and is currently wheelchair dependent, although he is learning to walk. He is currently under consideration for a selective dorsal rhizotomy to further help. Proposal was to fund a special exercise trike to help to develop his leg strength, and with the family having raised some funding, we agreed to fund the balance.
£205.00 for a 3 year old with a diagnosis of cerebral palsy, and Wheelchair Services recently provided a seating system for him but will only fund certain basic items. He also requires a tray unit for his specific needs and we agreed to fund the extra cost.
£1,102.40 for a 13 year old with a diagnosis of Downs Syndrome and has other medical problems. She struggles with her balance and a special exercise trike was proposed to help to develop her leg muscles, general fitness, and improve her general mobility, which we agreed to fund.
13.11.20 We completed a grant of £514.88 for a magnet harness for a 6 year old with partial foetal alcohol syndrome and a range of other medical problems. It was urgently needed to hold him securely when being transported as he was releasing himself from his existing harness and presenting a hazard to himself, the driver and any other occupants.
10.11.20 We completed a grant of £361.52 for a Diono Radian 5 car seat for a one year old with spinal muscular atrophy type 1, and significant breathing problems which mean that he was unable to tolerate a standard car seat. After a full assessment the Diono seat was specified and we agreed to fully fund.
08.11.20 We have completed three further grants despite starting our second lockdown in England:
£2,241.00 for a 7 year old with a diagnosis of Lissencephaly (a life limiting brain condition) and a range of other problems. He is unable to walk and requires a fully supportive and secure car seat for transport. After a full assessment, he was found to require a more expensive type of seat to the type normally funded, due to his condition, and we agreed to fully fund.
£1,222.05 for a 3 year old with a diagnosis of cerebral palsy and has who been provided with an R82 Xpanda chair to hold him in the correct position when seated. However, he is unable to tolerate this for other than short periods, and needs another more comfortable secure seating system which will provide some support when not using the Xpanda chair. The request was for a Ppod bean seat and we agreed to fully fund.
£462.64 for a 1 year old with a diagnosis of a degenrative genetic disorder which exhibits with uncontrollable seizures, global development delay, and serious hypotonia. He is unable to support his head or trunk and needed a suitable special car seat to hold him securely. He was assessed at the Regional Driving Assessment Centre (RDAC) and a suitable seat was selected, which we agreed to fully fund.
05.11.20 We completed two further grants during the week:
£905.00 for a 15 year old with a diagnosis of cerebral palsy who underwent a Selective Dorsal Rhizotomy to improve his movement. During lockdown he had access to specialised exercise equipment which helped to improve his fitness and also improved his walking. On return to school, this facility was lost and we were asked to help with funding an item of exercise equipment to help to maintain the mobility that he has gained, which we agreed to fully fund.
£1,442.60 for a 10 year old with a diagnosis of Angelman Syndrome, which presents as inability to verbally communicate, learning difficulties, some mobility limitations and epileptic seizures. Six years ago we funded a special exercise trike for her, which we are advised has been a great help with exercise and muscle development, but she has now outgrown it, and the trike has been donated by the family to another child with the same syndrome. We were asked to help with funding a new trike fitted with the additional equipment and support she will require, and we agreed to fully fund. The final price was reduced by our agreed discount with the supplier.
29.10.20 We completed a grant of £1,840.00 for two brothers with a diagnosis of WOREE Syndrome which is a severe form of epilepsy characterized by absence of language development, lack of ability to walk, and early onset drug resistant seizures , sight problems and a prognosis of a high likelihood of premature death. They already have a lot of specialised equipment at home including a fixed ceiling track hoist in the bedroom. However, as they grow, there are increasing needs for hoist assistance all over the house, and funding for a foldable, easy to move, portable hoist was requested, which we agreed to fully fund.
The grant on the 29.10.20 completed 740 grants made since we started, and reached the milestone of £900,000 granted with zero administration costs.