News & Forthcoming Events
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Last Update: 23.05.19 During 2019, the details of our work are: 38 Grants completed to date, and the total amount granted in 2019 is: Our Activity in Recent Years:
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£41,073.07 |
News about the Charity:
With completion of the 15th Grant in 2019 we reached the major milestone of £750,000 raised and granted without taking a single penny from the Charity in administration costs. Everything donated was used for the benefit of the children. This has occurred only two years (almost to the day) from completion of the previous milestone of £500,000 raised and granted. While we hope to target our next big milestone by 2021, we are increasingly limited by the funding we can raise, and , as usual, we shall need 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 2019:
We started the year with a collection of £720.00 from an 80th Birthday Party, held at Stourbridge Rugby Club. A very kind and useful donation which will be a great help. The St Thomas's Church Xmas Tree Collection has also provided a further useful boost of £250.00. We also received the second of a three year support package from the Barbara Ward Foundation, with another £5,000.00 added to our reserves.
2019 has seen an exceptionally busy start to the year, and with reserves depleted, a short respite to give us time to catch up with our fundraising would be appreciated. Sadly, with the demand that we see, this is unlikely to happen, and 2019 will yet again be a challenge.
As a help towards that funding challenge, local nPower Office staff collected £500.00 for us, which has been matched by the company. Apparently, we helped a child at the start of the year who is related to a member of staff, and they very kindly decided to organise a collection for us. The funding was much needed and has already helped with the latest grant. So thank you again nPower.
Stourbridge Motorcycle Club are holding their Annual Event on July 13th, and we are to be one of the two designated charities to receive a share of the funds raised, so a big thank you to them, and if you have the opportunity, please go along and support them.
News of Recent Grants Made:
23.05.19 Despite our very low reserves, with some funding coming in we have been able to complete another grant this week.
£1,909.75 for a 12 year old with a diagnosis of a grade 2 intrinsic spinal cord tumour in 2016. He received resection surgery followed by Proton Beam Therapy, which was successful. He is still working to rebuild his leg muscle strength, and balance and his Paediatric Physiotherapist recommended a special exercise trike, which we agreed to fully fund.
13.05.19 We have raised sufficient funds to complete another grant for a 14 year old with a diagnosis of unbalanced translocation of chromosome 22, which exhibits as gross development delay and mobility problems. She has outgrown her walker, and was recently re-assessed for a new unit for use at school. As this is now too large to transport, we have been requested to help with funding a similar unit for home use, which is a request we often receive. We agreed to fully fund the £1,840.00 required.
28.04.19 We have completed one small grant for 4 year old with a diagnosis of Smith Magenis Syndrome which exhibits as delayed speech and language, poor sleep, and challenging behaviour. She needs protection from head banging at night, and we were asked to help with the installation of a Safespace unit which had become available from another family. As it was originally privately funded, the NHS would not cover the installation cost as it was not the original owner. The funding of £400.00 enabled an available unit to be re-used and provide the urgent help needed.
16.04.19 There was a delay for a couple of weeks pending receipt of the Gift Aid Claim, which brought in £5,556.16 within a couple of days of filing the claim on the 6th April. This, together with a few small donations, replenished reserves and allowed us to proceed with a number of applications which had come in, and several subsequently. The level of activity continues to be high, and we have actually completed a further 10 grants in the period: Once again, a significant number of these were small grants, highlighting the beneficial effect that small sums in targetted areas can have.
£1,917.00 He has a severe learning disability and a diagnosis of ASD (Autistic Spectrum Disorder), and requires extensive supervision from his mother who acts as a full time carer. A special exercise trike was proposed by his Paediatric Occupational Therapist to help his development, and we agreed to fully fund
£339.53 He has multiple medical, learning and behavioural needs and is in a long term foster care placement. A suitable car seat was required to provide the support required, with a tilt/turn function to allow easy access. The price was reduced by our agreed discount with the supplier and we agreed to fully fund.
£249.98 She has a diagnosis of cerebral palsy, microcephaly and development delay. To help her development Rebound therapy was proposed, and we were asked to help. We are familiar with this technique, used extensively at two local special schools, and we agreed to fund.
£1,358.45 He has a diagnosis of cerebral palsy spastic diplegia, and is starting to make some progress, now being able to take a few steps with a K-Walker. He needs to develop his leg muscle strength, and a special exercise trike was proposed by his Physiotherapist. We agreed to fund the purchase following a full assessment by the supplier.
£1,285.85 She has a genetic condition with duplication of chromosome 1q, resulting in hypotonia (low muscle tone) and learning difficulties. She can walk but has poor balance and fatigues easily, and her Paediatric Physiotherapist recommended a special exercise trike to help to develop her muscle strength and coordination. With the family having raised £200.00 towards the cost, we agreed to fund the balance.
£1,362.00 Request for the purchse of two items of mobility equipment for senior pupils at Penn Hall Special School. One has a complex medical history with a range of problems, including treatment for a brain tumour, and he requires a special seating system to fully support him in class. The other is for a student with a diagnosis of Ullrich congenital muscular dystrophy, who requires an abductor to assist with her personal care. In view of the extreme pressure on special school equipment budgets, we agreed to fully fund.
£295.99 He has a range of vision problems which can not be corrected by glasses. He currently has to use large print text books which limits his access to information. The request was for a suitable iPad to allow him to read much larger font, and it will also help him to access a wider range of information, particularly important as he is about to move on to Secondary School, so we agreed to approve the funding.
£459.25 He was born with a chromosome deletion which exhibits as development delay, epilepsy, and arthropyrosis (joint contractures) and needs a number of items of special needs equipment. We were asked to help with the purchase of a special car seat and agreed to fully fund.
£709.75 He has a diagnosis of Idiopathic Juvenile Osteoporosis which has presented as vertebral compression fractures. He has low strength in his lower limbs and a special exercise trike was proposed to help to build his leg strength. The cost with our discount structure was £1,424.75, and with another charity contributing £715.00, a balance of £709.75 was required which we agreed to fund.
£516.00 She has a diagnosis of Cerebral palsy spastic quadriplegia, is unable to sit unaided, has mobility problems, is tube fed, and she has vision problems. The proposal was to fund a special activity mat which has a facility to securely hold and fully support her, which would help her development. We agreed to fully fund.
16.03.19 In the last fortnight we have completed 5 further grants, which shows just how busy we have been this year:
£632.00 for a 6 year old with a diagnosis of Down's Syndrome, chronic lung disease, a residual VSD following heart surgery, learning disabilities, and he can only walk for short distances. We were asked to fund a fully supportive special car seat to hold him safely and securely for transport, as he escapes from his current seat. He was fully assessed at RDAC, and we agreed to fully fund the seat required.
£533.00 for a 3.7 year old with a severe learning disability, sensory problems and is being assessed for autism. The proposal was for a special seat to help with her sensory skills, and enable her to engage more in activities. We agreed to fully fund.
£1,000.00 for a 7 year old with a diagnosis of Cerebral palsy, epilepsy, minimal head control, abnormal arm movements, and problems with taking food. Currently peg fed, and with other problems, an Acheeva bed was required to help with his daily needs. With a cost of £5,270.00 we needed to co-fund and pledged £1,000.00 pending the balance of funding being raised.
£318.45 for a 3 year old with a diagnosis of microcephaly and epi;epsy, significant global development delay, and hearing and visual impairment. Dudley Vision Impairment Service recommended a number of small items to help him to develop with his limited sight, and we agreed to fully fund.
£1,185.65 for a 4.5 year old with a diagnosis of cerebral palsy spastic diplegia and a Chiari malformation (brain abnormality). He has walking difficulties, uses leg splints, a walker and a standing frame, and will shortly start using a wheelchair which he will need when he begins school. His Paediatric Physiotherapist recommended a special exercise trike to help to build his leg and trunk muscle strength, and to improve his coordination. With the family having raised £200.00, we agreed to fund the balance required for the purchase tp proceed.
03.03.19 We completed a grant for a 2.25 year old with a diagnosis of Chromosome 22q11 duplication, which presents as microcephaly, global development delay, vision problems, and hypotonia. He is unable to sit unsupported, and is being provided with a special buggy by Wheelchair Services. A fully supportive special car seat was required to hold him in the correct position, which we agreed to fully fund.
With completion of the 15th Grant in 2019 we reached the major milestone of £750,000 raised and granted without taking a single penny from the Charity in administration costs. Everything donated was used for the benefit of the children. This has occurred only two years (almost to the day) from completion of the previous milestone of £500,000 raised and granted. While we hope to target our next big milestone by 2021, we are increasingly limited by the funding we can raise, and , as usual, we shall need 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 2019:
We started the year with a collection of £720.00 from an 80th Birthday Party, held at Stourbridge Rugby Club. A very kind and useful donation which will be a great help. The St Thomas's Church Xmas Tree Collection has also provided a further useful boost of £250.00. We also received the second of a three year support package from the Barbara Ward Foundation, with another £5,000.00 added to our reserves.
2019 has seen an exceptionally busy start to the year, and with reserves depleted, a short respite to give us time to catch up with our fundraising would be appreciated. Sadly, with the demand that we see, this is unlikely to happen, and 2019 will yet again be a challenge.
As a help towards that funding challenge, local nPower Office staff collected £500.00 for us, which has been matched by the company. Apparently, we helped a child at the start of the year who is related to a member of staff, and they very kindly decided to organise a collection for us. The funding was much needed and has already helped with the latest grant. So thank you again nPower.
Stourbridge Motorcycle Club are holding their Annual Event on July 13th, and we are to be one of the two designated charities to receive a share of the funds raised, so a big thank you to them, and if you have the opportunity, please go along and support them.
News of Recent Grants Made:
23.05.19 Despite our very low reserves, with some funding coming in we have been able to complete another grant this week.
£1,909.75 for a 12 year old with a diagnosis of a grade 2 intrinsic spinal cord tumour in 2016. He received resection surgery followed by Proton Beam Therapy, which was successful. He is still working to rebuild his leg muscle strength, and balance and his Paediatric Physiotherapist recommended a special exercise trike, which we agreed to fully fund.
13.05.19 We have raised sufficient funds to complete another grant for a 14 year old with a diagnosis of unbalanced translocation of chromosome 22, which exhibits as gross development delay and mobility problems. She has outgrown her walker, and was recently re-assessed for a new unit for use at school. As this is now too large to transport, we have been requested to help with funding a similar unit for home use, which is a request we often receive. We agreed to fully fund the £1,840.00 required.
28.04.19 We have completed one small grant for 4 year old with a diagnosis of Smith Magenis Syndrome which exhibits as delayed speech and language, poor sleep, and challenging behaviour. She needs protection from head banging at night, and we were asked to help with the installation of a Safespace unit which had become available from another family. As it was originally privately funded, the NHS would not cover the installation cost as it was not the original owner. The funding of £400.00 enabled an available unit to be re-used and provide the urgent help needed.
16.04.19 There was a delay for a couple of weeks pending receipt of the Gift Aid Claim, which brought in £5,556.16 within a couple of days of filing the claim on the 6th April. This, together with a few small donations, replenished reserves and allowed us to proceed with a number of applications which had come in, and several subsequently. The level of activity continues to be high, and we have actually completed a further 10 grants in the period: Once again, a significant number of these were small grants, highlighting the beneficial effect that small sums in targetted areas can have.
£1,917.00 He has a severe learning disability and a diagnosis of ASD (Autistic Spectrum Disorder), and requires extensive supervision from his mother who acts as a full time carer. A special exercise trike was proposed by his Paediatric Occupational Therapist to help his development, and we agreed to fully fund
£339.53 He has multiple medical, learning and behavioural needs and is in a long term foster care placement. A suitable car seat was required to provide the support required, with a tilt/turn function to allow easy access. The price was reduced by our agreed discount with the supplier and we agreed to fully fund.
£249.98 She has a diagnosis of cerebral palsy, microcephaly and development delay. To help her development Rebound therapy was proposed, and we were asked to help. We are familiar with this technique, used extensively at two local special schools, and we agreed to fund.
£1,358.45 He has a diagnosis of cerebral palsy spastic diplegia, and is starting to make some progress, now being able to take a few steps with a K-Walker. He needs to develop his leg muscle strength, and a special exercise trike was proposed by his Physiotherapist. We agreed to fund the purchase following a full assessment by the supplier.
£1,285.85 She has a genetic condition with duplication of chromosome 1q, resulting in hypotonia (low muscle tone) and learning difficulties. She can walk but has poor balance and fatigues easily, and her Paediatric Physiotherapist recommended a special exercise trike to help to develop her muscle strength and coordination. With the family having raised £200.00 towards the cost, we agreed to fund the balance.
£1,362.00 Request for the purchse of two items of mobility equipment for senior pupils at Penn Hall Special School. One has a complex medical history with a range of problems, including treatment for a brain tumour, and he requires a special seating system to fully support him in class. The other is for a student with a diagnosis of Ullrich congenital muscular dystrophy, who requires an abductor to assist with her personal care. In view of the extreme pressure on special school equipment budgets, we agreed to fully fund.
£295.99 He has a range of vision problems which can not be corrected by glasses. He currently has to use large print text books which limits his access to information. The request was for a suitable iPad to allow him to read much larger font, and it will also help him to access a wider range of information, particularly important as he is about to move on to Secondary School, so we agreed to approve the funding.
£459.25 He was born with a chromosome deletion which exhibits as development delay, epilepsy, and arthropyrosis (joint contractures) and needs a number of items of special needs equipment. We were asked to help with the purchase of a special car seat and agreed to fully fund.
£709.75 He has a diagnosis of Idiopathic Juvenile Osteoporosis which has presented as vertebral compression fractures. He has low strength in his lower limbs and a special exercise trike was proposed to help to build his leg strength. The cost with our discount structure was £1,424.75, and with another charity contributing £715.00, a balance of £709.75 was required which we agreed to fund.
£516.00 She has a diagnosis of Cerebral palsy spastic quadriplegia, is unable to sit unaided, has mobility problems, is tube fed, and she has vision problems. The proposal was to fund a special activity mat which has a facility to securely hold and fully support her, which would help her development. We agreed to fully fund.
16.03.19 In the last fortnight we have completed 5 further grants, which shows just how busy we have been this year:
£632.00 for a 6 year old with a diagnosis of Down's Syndrome, chronic lung disease, a residual VSD following heart surgery, learning disabilities, and he can only walk for short distances. We were asked to fund a fully supportive special car seat to hold him safely and securely for transport, as he escapes from his current seat. He was fully assessed at RDAC, and we agreed to fully fund the seat required.
£533.00 for a 3.7 year old with a severe learning disability, sensory problems and is being assessed for autism. The proposal was for a special seat to help with her sensory skills, and enable her to engage more in activities. We agreed to fully fund.
£1,000.00 for a 7 year old with a diagnosis of Cerebral palsy, epilepsy, minimal head control, abnormal arm movements, and problems with taking food. Currently peg fed, and with other problems, an Acheeva bed was required to help with his daily needs. With a cost of £5,270.00 we needed to co-fund and pledged £1,000.00 pending the balance of funding being raised.
£318.45 for a 3 year old with a diagnosis of microcephaly and epi;epsy, significant global development delay, and hearing and visual impairment. Dudley Vision Impairment Service recommended a number of small items to help him to develop with his limited sight, and we agreed to fully fund.
£1,185.65 for a 4.5 year old with a diagnosis of cerebral palsy spastic diplegia and a Chiari malformation (brain abnormality). He has walking difficulties, uses leg splints, a walker and a standing frame, and will shortly start using a wheelchair which he will need when he begins school. His Paediatric Physiotherapist recommended a special exercise trike to help to build his leg and trunk muscle strength, and to improve his coordination. With the family having raised £200.00, we agreed to fund the balance required for the purchase tp proceed.
03.03.19 We completed a grant for a 2.25 year old with a diagnosis of Chromosome 22q11 duplication, which presents as microcephaly, global development delay, vision problems, and hypotonia. He is unable to sit unsupported, and is being provided with a special buggy by Wheelchair Services. A fully supportive special car seat was required to hold him in the correct position, which we agreed to fully fund.