Oliver’s Therapies 

Our Son Oliver has a very rare condition called Acute Necrotising Encephalopathy of Childhood (ANEC) this is a rare brain condition affecting just 150 people across the world. 

We as parents feel it is very important to get him in many therapies as we can whist he is young, for the chance of a better recovery. 

Unfortunately a lot of these therapies that we want to get Oliver into, is not funded by the NHS, either is any of the staff trained in these therapies in the NHS, due to the fact that the NHS would not train them as they do not have or funds this type of treatment.

On our journey of Oliver’s illness we have found many treatments that can help and would benefit Oliver, but they come at such an expense cost.

Below is an example of some of the places where we would like to take Oliver, how this can help Oliver and the price of how much it will cost for Oliver to attend there. 

There are four centres that are on our must do list for Oliver. The first one we started 1 year ago at Footsteps, Oliver also attends Brainwave in Somerset, At present we are trying to get Oliver to The PACE Centre, which is school and children’s charity that transforms the lives of children and young people with motor disorders, such as cerebral palsy, And the recent therapy we’ve have found is hydrotherapy Chambers, this has such a good rating in brain damage recovery.

FootSteps Foundation

Oliver started his footsteps foundation in 2017.

The cost of the Footsteps therapy programme is £55 per hour. A three week therapy block for one hour a day is £825, for two hours a day it is £ 1,650 and for three hours a day it is £2, 475.  In the 1st two years Oliver will only be doing one therapy block in a year, after the two years which will be 2019 this will go up to two therapy blocks in a year, at a much later date three therapy blocks will be needed in a year, costing a whopping £7,425 per year.

The outcome that Oliver had when he first done his footsteps foundation back in 2017, we notice improvements in his core, they weren’t massive improvement, but it is going in the right direction. We have found that he has become stronger in his core muscles and we were given instruction on how to carry this out at home, when Oliver started footsteps for the 1st time his core with extremely weak.

For Oliver to get a stronger body, going to footsteps would greatly help him. We want Oliver to be able to walk again and this kind of therapy will help make Oliver stronger.

Brainwave

Brainwave is a physiotherapy centre we found at the beginning of 2018 when we were doing more research for Oliver. Brainwave is also a charity, they help raise funds to make the expense sessions more affordable, however we still need fundraises to pay the outstanding balance of the session, the cost is £300 to £500 per session. Oliver will need one session every six months.

Sessions can last for one or two days, within the sessions they teach us different types physio to help make Oliver’s body stronger and to help with his body awareness. 

This will be put on a DVD for us to take home and carry on with Oliver’s physiotherapy so we are remaindered how to do Oliver’s physiotherapy correctly.

The Facilities brainwave has is Fully Equipped Rooms There is four therapy rooms which are all fully equipped to support the assessment.  Equipment available in each room includes physio balls, wedges and rolls as well as many educational resources and toys. 

The Sensory Room they have is a safe place for your child to relax in and enjoy the lights and other sensory input. The sensory room can be used as a calming space to help a child regulate themselves as well as providing opportunities for engagement through interaction with the equipment.

There Hydro pool is used with the therapists at Brainwave help the children in the hydrotherapy pool.  A develop programme of exercises is made to help children to relax in the water, improve their confidence, float with aids and where appropriate work towards independent swimming.

Hyperbaric Oxygen Therapy

We have Oliver booked this year for 10 Hyperbaric Oxygen Therapy (HBOT) Package at Body Vibrant, Slough, Which will cost £1,500. Oliver will need this twice a year to help Oliver recovery, (the year 2018 he will only be having the one session) please see information below on prices and what will be involved in this type of Therapy.

Here is a newspaper article about a man that had HBOT and the outcome he had.

We are also look into the treatment that was recommended by Body Vibrant called life wave patches which we are doing more research on this treatment.

Oliver started his Hyperbaric Oxygen Therapy sessions for the first time on the 13th August 2018. We had to take Oliver to Slough where there was two lovely ladies, Shemey and Debbie, who were both trained therapists for Oliver’s treatment. This was a 4 week course with ended on the 7th September 2018. Oliver has been getting more vocal and he has been starting to say the odd word since he started his Hyperbaric Oxygen Therapy sessions he said the words Daddy, Mummy, I’m here, Crazy Horses and Hello.

This month we also will be getting delivered of our new Hyperbaric Oxygen Chamber, all the way from the US State, Florida. This means that Oliver can use HBOT every day at home. This cost is £800 a month, the total cost of the Chamber is £15,000, this is one we will have to do lots of fundraising for.

Oliver’s Helpful Buddies

 
 
 
 

B.O.B Fundraising is held in a Trust Fund Account prepared by legalmatters limited registered in England and Wales No. 08216822.

If you have any queries regarding Oliver's Trust fund please contact Legal Matters on 01243 216900 or email

legalmatters website

Opportunities For Oliver is our new Registered Charity No 1164473 under B.O.B Fundraising.

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