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Edward Braun

Thank you for taking the time to visit my JustGiving page.

Our younger son, Eddie, has a severe brain injury. We found out shortly before he was born that Eddie had suffered some sort of cerebral infarction, most likely a stroke, whilst still in utero. However just before Christmas it was confirmed that Eddie in fact has a rare genetic condition, a mutation of his COL4a2 gene which caused a/some bleeds on his brain, in turn resulting in a large porencephalic cyst on the left side of his brain with some further damage on the right side also. Consequently Eddie has various neurological conditions, including cortical vision impairment, right hemiplegia, west syndrome and global developmental delay. West syndrome, also known as infantile spasms, is a rare and severe epilepsy syndrome and it has had a truly devastating impact on his development.

We have started to work with the Family Hope Center (FHC) to try give Eddie the best possible chance of developing. In September I attended an intensive three day parent training course with the FHC, this was followed by a two day assessment after which the FHC’s clinical team developed an individualised, comprehensive programme of activities for us to do at home with Eddie. This will be revised every six months during routine follow up assessments with the FHC team.

But why? Since the day the cyst on Eddie’s brain was found at 35 weeks gestation, the various medical professionals that we have seen have all talked about the wonders of neuro plasticity, especially in babies. But the real lack of NHS funding means we get very little professional input to actually help with Eddie's neurological and physical development.

In addition, over the last few months we have had recommendations from our physiotherapist and OT about various pieces of equipment that they suggest Eddie would benefit from, but which they cannot provide. We have also experienced some NHS services being withdrawn due to staffing shortages, for example until recently Eddie was able to attend a weekly hydrotherapy session with the local physiotherapy team, but we now need to find a private alternative as they have cancelled the classes.

We have decided to join the Tree of Hope to try raise funds to help us manage the ongoing costs associated with Eddie’s needs. It was not an easy decision to make to go down this path, and we appreciate you visiting this page to find out more about it.

I thought I'd add a short list of the sort of things we are hoping to fund;

1) Family Hope Centre training, reassessment & support, plus associated travel and accommodation costs                                                                   2) Regular Equine therapy sessions at Freedom Equine Centre                  3) Additional physiotherapy sessions                                    4)Hydrotherapy                                                                                                   5) CFT sessions at Blue Skies ahead or Cranial osteopathy                                                                                                                          

7.5% of all donations to Tree of Hope in relation to this appeal will be allocated to the general charitable purposes of Tree of Hope to cover our core operating costs.

If we raise insufficient funds, or surplus funds, then the funds will be used, if appropriate, to fund support for our child’s needs in accordance with Tree of Hope’s charitable objects. If in those circumstances we are unable to use all or part of the funds for the benefit of our child in accordance with Tree of Hope’s charitable objects, then any funds that cannot be used will be transferred to be used for the general charitable purposes of Tree of Hope.

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