News & Forthcoming Events
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Last Update: 22.11.20 During 2020, the details of our work are: 65 Grants completed to date Our Activity in Recent Years:
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£75,256.83 |
We have seen an increase in the number of smaller grants in the last few years. In 2019 our analysis showed that 53.6% of our grants (by number) required only 25% of our funding. With the steady expansion of our contact base, we are now helping more families with small items which make a big difference to the problems they face.
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 this year 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.
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.
Current and Future Events in 2020:
Stourbridge Golf Club collected £2,147.60 for us during the previous Captain's period of office, which we received in early March, and which was greatly appreciated, as although 2020 has started quietly, both applications and application enquiries have suddenly risen sharply as we enter March, and continued since then.
We also received a Funeral Collection, which was a very kind gesture from the family, and which raised £150.00. Contact was made with the Undertaker, who showed some interest in the work of the Charity, raising the possibility of occasional additional collections when families are looking for suggestions for a local Children's charity.
We have also received the third payment, of a three year programme, from the Barbara Ward Children's Foundation (£5,000.00), a donation from the Geoff Hill Charitable Trust (£500.00), who are local to us, and HMRC responded quickly to our Gift Aid claim which was submitted on 6th April, and we received £4,831.14. This funding has helped to offset recent requests for help, which exceeded £5,000 in the third week of April. We also received the proceeds of a table collection from Newfields Masonic Lodge (£110.00), and a purchase commissions payment of £39.00 from Everyclick. We are starting to generate some commission from our registration with Amazon Smile (Smile.Amazon.co.uk), but we were advised that we have not yet reached the threshold for payment at the end of Q1 (not surprising as we only started towards the end of the quarter), however, Amazon still donated £5.00 for Q1 as we had now started using the scheme. It will take time to build these payments as the Amazon commission rate is only 0.5%, so expenditure needs to reach £1,000.00 to generate the normal minimum of £5.00, but at least any expenditure will generate some funding for the Charity.
We are now also registered with Recycle4Charity which pays £1 for every used ink cartridge returned which incorporates a printed circuit board (there is a list on their website of eligible cartridges) and we hope that several groups collecting for us might also consider this option to raise further funds, along with our usual supporters individually participating. In late October we received our first payment for accepted cartridges recycled. Wew have also received some support from a local charity - The CB & HH Taylor Trust, and further support from the Hedley Foundation.
News of Recent Grants Made:
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.
28.10.20 We have completed two further grants:
£449.00 She has regular epileptic seizures and is at risk from undetected seizures during sleep (SUDEP) which can cause severe neurological damage and possible death. The proposal was to fund a wrist band which would provide an alert in the event of a change in her condition during the night, and we agreed to fully fund.
£260.00 for a 13 year old with a diagnosis of cerebral palsy quadriplegia together with other medical problems. She needs a portable hoist for general lifting requirements when she is away from a ceiling hoist already installed. The cost was £2,260.00 and with the family having raised £2,000 from another charity, we were asked to fund the balance, which we approved.
23.10.20 We have completed a grant of £1,346.30 for a 7 year old with a diagnosis of microdeletion of the DMD gene. She exhibits with global development delay, gastrostomy fed, scoliosis, visual impairment and mobility problems. Proposal was for a special trike to try to develop her leg muscles and improve mobility , and we agreed to fully fund.
07.10.20 We have completed two further grants:
Both for special exercise trikes
£1,447.15 for a 3 year old with a diagnosis of cerebral palsy, which particularly affects his right side. This exhibits as muscle weakness, problems with speech, motor skills, and mobility. A special exercise trike was proposed which we agreed to fully fund.
£1,548.70 for a 6 year old with a diagnosis of Cri Du Chat Syndrome, which exhibits with global development delay, mobility problems (she is not independently mobile), motor skills and feeding problems, and weak muscles. The proposal was to fund a special exercise trike to try to improve her general health, muscle strength, coordination and mobility, and we agreed to fund the full discounted cost.
24.09.20 We have completed two further grants:
£685.21 He has a diagnosis of Charcot – Marie Tooth Syndrome, resulting in weakness in his limbs, and also exhibits development delay and mobility problems. He has a wheelchair which he struggles to push, and uses a walker when possible. The request was for a second walker for home use to enable him to gain maximum exercise benefit as transport of his walker from school presents problems due to its size. We agreed to fully fund.
£585.87 He has a diagnosis of Kabuki Syndrome with a range of medical problems, and we have helped with equipment on a number of occasions. He required a powerpack to attach to his wheelchair, which was being sourced by the Family Support Worker, and we agreed to fully fund.
20.09.20 We have completed two further grants:
£650.60 She has a diagnosis of cerebral palsy spastic diplegia, and uses a wheelchair or a walker when one is available. NHS supplied unit is at school and difficult to transport due to its size, so proposal was to fund a second unit for home use to help her mobility, independence, and to improve her walking ability through greater availability of a walker.
£966.70 She has global development delay and a range of medical problems. She is non verbal, has both gross and fine motor skills problems, and struggles with her mobility. She can stand with the aid of splints, but has a dislocated hip which will require surgery. We were asked to help with funding a special exercise trike to help to develop her general health, leg muscle strength and coordination. With the family having raided some funding, and our supplier discount, we agreed to fund the balance.
14.09.20 We have completed three further grants:
£1,292.45 She has a diagnosis of a very rare genetic condition – Bosch Boonstra Schaaf Optic Atrophy Syndrome, which exhibits as a range of medical problems, vision impairment, and development delay. She has weak muscle tone and poor balance, and uses a wheelchair for any distance movement. The proposal was to fund a special exercise trike to help to develop her muscles and coordination, to improve her general mobility.
£803.50 He has a diagnosis of global development delay and challenging behaviour. He needed a car seat fitted with a suitable restraint harness to hold him securely when being transported as he releases himself at present and becomes a serious risk due to him behavioural problems. As we have a discount agreement with the selected supplier, we were able to obtain a saving on the original quoted price.
£928.00 He has a diagnosis of Cerebral palsy and autism, and uses a wheelchair when outside. Request was for funding for a special exercise trike to help with muscle development, coordination and general mobility. Some charitable funding already raised and we agreed to fund the balance required.
04.09.20 We completed a grant of £577.73 for a special trike for a 22 year old with a diagnosis of ASD, learning difficulties and other problems. The family had maneged to raise £2,750.00 but felt they had exhausted all options so approached us. With our discount, the final cost reduced to £3,327.73, and we agreed to fund the balance required.
25.08.20 We recently completed two further grants:
£2,380.00 for a 7 year old. One of three siblings, all with medical problems, although he is the worst affected. He is incontinent, still in nappies and requires regular changing. His mother acts as a full time carer but also has severe medical problems and finds it very difficult to bend down to change him. A raise/lower bed was urgently required to help the family and we agreed to fund the full cost.
£1,311,45 for a 9 year old with a diagnosis of Cerebral Palsy with epilepsy. This affects his mobility as he has great difficulty in coordinating leg movements, he has weak muscles and his balance is affected. He receives regular physiotherapy and has been using a special exercise trike to try to develop both his leg muscles and coordination. Having now outgrown his trike we were asked if we could fund the balance required for the purchase to proceed, which we approved.
02.08.20 We completed two further grants:
£1,145.00 for a 3 year old with a diagnosis of quadriplegic cerebral palsy, and a range of other medical problems including seizures, following oxygen starvation at birth. She has problems with sitting and her mobility, and the proposal was for the purchase of a special exercise trike to help to develop her leg strength, balance and co-ordination. With the family having raised some funding via a donation website, we agreed to fund the balance required for the purchase.
£251.45 for a two year old with a diagnosis of Spinal Muscular Atrophy type 1, and exhibits with very weak muscles. This severely limits his ability to sit up and move and we were requested to help with funding some special needs toys suitable for his condition. We agreed to fully fund.
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 this year 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.
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.
Current and Future Events in 2020:
Stourbridge Golf Club collected £2,147.60 for us during the previous Captain's period of office, which we received in early March, and which was greatly appreciated, as although 2020 has started quietly, both applications and application enquiries have suddenly risen sharply as we enter March, and continued since then.
We also received a Funeral Collection, which was a very kind gesture from the family, and which raised £150.00. Contact was made with the Undertaker, who showed some interest in the work of the Charity, raising the possibility of occasional additional collections when families are looking for suggestions for a local Children's charity.
We have also received the third payment, of a three year programme, from the Barbara Ward Children's Foundation (£5,000.00), a donation from the Geoff Hill Charitable Trust (£500.00), who are local to us, and HMRC responded quickly to our Gift Aid claim which was submitted on 6th April, and we received £4,831.14. This funding has helped to offset recent requests for help, which exceeded £5,000 in the third week of April. We also received the proceeds of a table collection from Newfields Masonic Lodge (£110.00), and a purchase commissions payment of £39.00 from Everyclick. We are starting to generate some commission from our registration with Amazon Smile (Smile.Amazon.co.uk), but we were advised that we have not yet reached the threshold for payment at the end of Q1 (not surprising as we only started towards the end of the quarter), however, Amazon still donated £5.00 for Q1 as we had now started using the scheme. It will take time to build these payments as the Amazon commission rate is only 0.5%, so expenditure needs to reach £1,000.00 to generate the normal minimum of £5.00, but at least any expenditure will generate some funding for the Charity.
We are now also registered with Recycle4Charity which pays £1 for every used ink cartridge returned which incorporates a printed circuit board (there is a list on their website of eligible cartridges) and we hope that several groups collecting for us might also consider this option to raise further funds, along with our usual supporters individually participating. In late October we received our first payment for accepted cartridges recycled. Wew have also received some support from a local charity - The CB & HH Taylor Trust, and further support from the Hedley Foundation.
News of Recent Grants Made:
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.
28.10.20 We have completed two further grants:
£449.00 She has regular epileptic seizures and is at risk from undetected seizures during sleep (SUDEP) which can cause severe neurological damage and possible death. The proposal was to fund a wrist band which would provide an alert in the event of a change in her condition during the night, and we agreed to fully fund.
£260.00 for a 13 year old with a diagnosis of cerebral palsy quadriplegia together with other medical problems. She needs a portable hoist for general lifting requirements when she is away from a ceiling hoist already installed. The cost was £2,260.00 and with the family having raised £2,000 from another charity, we were asked to fund the balance, which we approved.
23.10.20 We have completed a grant of £1,346.30 for a 7 year old with a diagnosis of microdeletion of the DMD gene. She exhibits with global development delay, gastrostomy fed, scoliosis, visual impairment and mobility problems. Proposal was for a special trike to try to develop her leg muscles and improve mobility , and we agreed to fully fund.
07.10.20 We have completed two further grants:
Both for special exercise trikes
£1,447.15 for a 3 year old with a diagnosis of cerebral palsy, which particularly affects his right side. This exhibits as muscle weakness, problems with speech, motor skills, and mobility. A special exercise trike was proposed which we agreed to fully fund.
£1,548.70 for a 6 year old with a diagnosis of Cri Du Chat Syndrome, which exhibits with global development delay, mobility problems (she is not independently mobile), motor skills and feeding problems, and weak muscles. The proposal was to fund a special exercise trike to try to improve her general health, muscle strength, coordination and mobility, and we agreed to fund the full discounted cost.
24.09.20 We have completed two further grants:
£685.21 He has a diagnosis of Charcot – Marie Tooth Syndrome, resulting in weakness in his limbs, and also exhibits development delay and mobility problems. He has a wheelchair which he struggles to push, and uses a walker when possible. The request was for a second walker for home use to enable him to gain maximum exercise benefit as transport of his walker from school presents problems due to its size. We agreed to fully fund.
£585.87 He has a diagnosis of Kabuki Syndrome with a range of medical problems, and we have helped with equipment on a number of occasions. He required a powerpack to attach to his wheelchair, which was being sourced by the Family Support Worker, and we agreed to fully fund.
20.09.20 We have completed two further grants:
£650.60 She has a diagnosis of cerebral palsy spastic diplegia, and uses a wheelchair or a walker when one is available. NHS supplied unit is at school and difficult to transport due to its size, so proposal was to fund a second unit for home use to help her mobility, independence, and to improve her walking ability through greater availability of a walker.
£966.70 She has global development delay and a range of medical problems. She is non verbal, has both gross and fine motor skills problems, and struggles with her mobility. She can stand with the aid of splints, but has a dislocated hip which will require surgery. We were asked to help with funding a special exercise trike to help to develop her general health, leg muscle strength and coordination. With the family having raided some funding, and our supplier discount, we agreed to fund the balance.
14.09.20 We have completed three further grants:
£1,292.45 She has a diagnosis of a very rare genetic condition – Bosch Boonstra Schaaf Optic Atrophy Syndrome, which exhibits as a range of medical problems, vision impairment, and development delay. She has weak muscle tone and poor balance, and uses a wheelchair for any distance movement. The proposal was to fund a special exercise trike to help to develop her muscles and coordination, to improve her general mobility.
£803.50 He has a diagnosis of global development delay and challenging behaviour. He needed a car seat fitted with a suitable restraint harness to hold him securely when being transported as he releases himself at present and becomes a serious risk due to him behavioural problems. As we have a discount agreement with the selected supplier, we were able to obtain a saving on the original quoted price.
£928.00 He has a diagnosis of Cerebral palsy and autism, and uses a wheelchair when outside. Request was for funding for a special exercise trike to help with muscle development, coordination and general mobility. Some charitable funding already raised and we agreed to fund the balance required.
04.09.20 We completed a grant of £577.73 for a special trike for a 22 year old with a diagnosis of ASD, learning difficulties and other problems. The family had maneged to raise £2,750.00 but felt they had exhausted all options so approached us. With our discount, the final cost reduced to £3,327.73, and we agreed to fund the balance required.
25.08.20 We recently completed two further grants:
£2,380.00 for a 7 year old. One of three siblings, all with medical problems, although he is the worst affected. He is incontinent, still in nappies and requires regular changing. His mother acts as a full time carer but also has severe medical problems and finds it very difficult to bend down to change him. A raise/lower bed was urgently required to help the family and we agreed to fund the full cost.
£1,311,45 for a 9 year old with a diagnosis of Cerebral Palsy with epilepsy. This affects his mobility as he has great difficulty in coordinating leg movements, he has weak muscles and his balance is affected. He receives regular physiotherapy and has been using a special exercise trike to try to develop both his leg muscles and coordination. Having now outgrown his trike we were asked if we could fund the balance required for the purchase to proceed, which we approved.
02.08.20 We completed two further grants:
£1,145.00 for a 3 year old with a diagnosis of quadriplegic cerebral palsy, and a range of other medical problems including seizures, following oxygen starvation at birth. She has problems with sitting and her mobility, and the proposal was for the purchase of a special exercise trike to help to develop her leg strength, balance and co-ordination. With the family having raised some funding via a donation website, we agreed to fund the balance required for the purchase.
£251.45 for a two year old with a diagnosis of Spinal Muscular Atrophy type 1, and exhibits with very weak muscles. This severely limits his ability to sit up and move and we were requested to help with funding some special needs toys suitable for his condition. We agreed to fully fund.