Alfie’s Hope Fund – Confirmation of Management Arrangements
The Reason for Establishing Alfie’s Hope Fund
Alfie’s Hope Fund has been established to support Alfie Dingley of 10, Blackthorn Road, Kenilworth. Alfie has a non-inherited genetic mutation called PCDH19. This generally only causes a problem with girls, but in rare cases, it affects boys also. As a result, Alfie started having clusters of difficult to control seizures at eight months old. He is now five. His seizure clusters were originally every eight months. Now they are every eight to ten days.
Often, when Alfie has a seizure he stops breathing. Although this rights itself naturally quite quickly, it is very frightening. The seconds when he is not breathing can feel like a lifetime. His family, live with the fear of their beloved boy dying every week. Alfie has to be admitted to hospital via blue light ambulance to A&E, which is another unpleasant and frightening experience. He is treated with high doses of intravenous steroids, which have potentially harmful side effects.
His parents are fighting for Alfie to be given medical cannabis in the UK, as this has proved very helpful for other children around the world with this condition. However this drug is currently illegal in the UK. If his parent’s appeal, which is supported by a petition on www.change.org is not successful, they are hoping that Alfie can be given access to medical cannabis which is licensed and used in many states in USA, Germany, Ireland and Holland. Alfie has been given many anti-epilepsy drugs most of which have very unpleasant side effects and these have proved ineffective in controlling Alfie’s seizures.
Objectives for Alfie’s Hope Fund
1. To support work to convince Parliament including a petition, to enable Alfie to receive medical cannabis in the UK, under full medical supervision. This petition can be signed here.
2. If this is unsuccessful in a reasonable time scale, the Fund will help Alfie and his family to travel abroad to access medical cannabis. Income to the Fund will come from direct contributions and contributions through Just Giving – Hannah Deacon. Hannah is Alfie’s Mother.
3. If the Fund is not needed because the family are successful in the UK, then it will be used to support Alfie in other ways such as specialist home adaptations and equipment, respite care to give his parents recuperation time and the many extra costs of being in hospital.
Management of the Fund
1. The Fund will be administered by Alfie’s Grandmother – Margaret Deacon BA, CPFA, Pg.Dip., who will also produce annual accounts for the Fund.
2. The second bank signatory will be Mrs. Susan Jones of Four Gables, Fosse Way, Stow-on-the-Wold.
3. Alfie’s parents will make requests to the Fund for expenditure in accordance with its objectives.
4. A written statement of their requirements will be produced by the Administrator, Mrs. Deacon, including to whom any funds will be payable ie direct to a supplier or to Alfie’s parents and the reasons for this.
5. This will be submitted for approval to two independent assessors namely Lord Bassam of Brighton and Mr. Martin Perry of Coldharbour, Surrey.
6. Once approval has been received funds will be withdrawn under the signature of Mrs. Deacon and Mrs. Jones.
7. Should the funds raised not be needed to support Alfie for any reason, they will be donated to the Zoe’s Place charity, which provides a centre in Coventry for day and night respite care for sick children, which has been very supportive to Alfie and his family.
M. R. DeaconS. M. Jones