Thanks for taking the time to visit our JustGiving page.

We are Nick Horder, Chris Fox, Stuart Roberts, Dan Hyde, Jody Payne, and Chris Capes  Sean Sweeney, Neil Smith and Dom Leeson(in the support van).

At the end of September, we are planning to cycle from Chester to Snowdon, climb to the summit and then cycle back... in one day. That is 150 miles with a mountain to climb in the middle... here is why we are doing it... 

Our friends' son, Eddie, has a rare genetic condition which caused an intracerebral hemorrhage in utero, in turn resulting in significant damage to his brain. Consequently Eddie has various neurological conditions, including Infantile Spasms (IS), cortical vision impairment (Eddie is registered as severely sight impaired), right hemiplegia and global developmental delay.  IS is a rare and severe epilepsy syndrome which is catastrophic neurologically, and it has had a truly devastating impact on his development.

At present Eddie can’t sit unaided. However he has recently learnt to roll over (and very proud of himself he is too). His right side hemiplegia means that his left hand is his strongest however even then his fine motor skills are far from where they need to be. That said, he is able to use this hand to feed himself, which he loves to do. Albeit a somewhat messy affair! There are positive signs for Eddies’ development but due to the brain injury he has suffered, developmental milestones will be a lot slower coming and will require significant continuous input. He is non-verbal and his parents are presently undertaking a training programme to develop a method of communication as an alternative to (or to run in conjunction with) any verbal communication he may develop. The constant physical, practical and emotional input required from his parents makes day to day life exhausting. However they know that to give Eddie the best chances for his future, this is the path they need to follow and as such they never take for granted all of the support they receive.

Since the day the damage on Eddie’s brain was found at 35 weeks gestation, medical professionals have talked about the wonders of neuroplasticity, especially in babies. But the real lack of NHS funding means Eddie does not get enough regular professional input to help with his neurological and physical development. Accordingly we are hoping to raise funds to provide the following:

• Regular Physiotherapy (£80 per session)

• Regular Occupational Therapy (£80 per session)

• Equine Assisted Therapy  - horse riding to help his balance and core (£20 a session)

• CFT  - Cranial work (£40 a session)

• Continued training and assessments with The Family Hope Center (FHC). Eddie's parents have been working with FHC since September 2016 to deliver a neurological rehab therapy programme at home to support Eddie’s development

THANKS FOR READING ABOUT EDDIE, AND IN ADVANCE FOR YOUR KIND DONATION.

The family have decided to join the Tree of Hope to raise funds to help manage the ongoing costs associated with Eddie’s needs. Any funds raised for Eddie are held by Tree of Hope and only used for Eddie’s needs. Although both Tree of Hope and Justgiving take a small percentage of each donation with the ability to process Gift Aid we feel this is still the most efficient way to raise funds. 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 their core operating costs.

If we raise insufficient funds, or surplus funds, then the funds will be used, if appropriate, to fund support for Eddie’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.

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.