Weʼre raising £12,000 to fund essential therapy for Neve.
- 11 days to go
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Neve has several very serious neurological conditions – none of which can be cured and most cannot be treated with medication.
She has Microcephaly - the head doesn't grow as it should so neither does the brain. This negatively affects all areas of her life and development.
Lennox- Gastaut Syndrome (LGS). This is a form of epilepsy which means Neve suffers from all types of seizures and can suffer numerous seizures everyday. Although medication can help to a point, LGS is a drug resistant form of epilepsy so medication will never fully control the seizures. It also continues through to adulthood meaning Neve will always need care.
Hypotonia- Neve has very weak muscle tone meaning she can't stand, walk, and until recently couldn’t sit, without 100% support. She is non- verbal and eating/ chewing is difficult for her.
Global developmental delay (GDD). The effects of all these conditions have left Neve significantly delayed in all areas of her development.
All the factors outlined above mean we have had to look outside of conventional medicine and NHS treatments for Neve. The therapy programme we use is designed by an American organisation, Family Hope Center & is based on the principles of neuroplasticity. The programme covers seeing and reading, hearing and understanding, sensation and tactility, locomotion and mobility, communication and speech, manual and writing and emotional and social.
FHC visit the UK twice a year so in September 2016 I did a 3 day parent teach course in functional neurology with them, from which we put together a partial therapy programme for Neve. However in April 2017 she met the whole team and was given a bespoke therapy programme and nutrition programme- all focused on healing her brain and initiating key reflexes.
The exercises we have for Neve are not difficult but need to be done everyday, multiple times a day- to be successful. Her total programme is currently just over 5 hours but this will increase as she progresses. Both Neve's schools (Springfield in Crewe and St John’s Primary school, Sandbach Heath) are very supportive and are helping to complete the therapy which includes crawling to initiate the babinski reflex (and therefore the Pons), Olfactory (limbic system), initiating the babkin reflex to ensure Neve is 'switched on' at all times, reflex bags to increase oxygen to her brain and increase lung function, tactile exercises, oral exercises, wearing a breathing vest overnight ... and many more.
The methods used by FHC are not available within the NHS but Neve's physio, OT & SALT are also very supportive and have included the programme in Neve's EHCP (school statement) & their own plans for her therapy. Neve's paediatrician is aware of the programme and supportive although is unable to be directly involved.
We need to raise more than £12,000 to cover the cost of paying Family Hope Center, buy the necessary equipment, supplements and pay for regular sessions of cranial sacral therapy.
However, the difference the therapy has made to Neve’s quality of life is more than worth every penny! When we saw her neurologist at the end of March 2017, she said Neve was suffering from epileptic encephalopathy (a permanent state of seizure) and that she could only be worse if she was in a coma in intensive care. We saw FHC 2- 4 April 2017 and started therapy as soon as we got home. On the 14th April Neve showed her first real improvement and was ‘herself’ again – smiling, laughing, playing etc.
Since then she has been largely seizure free. She has regained all the skills she learnt before seizures took over, and many more new ones! She is stronger than ever & healthier than ever.
When we saw the team at the beginning of May 2018 she was assessed in all areas of development. Over 13 months Neve had remained almost seizure free (only having seizures when unwell), had made 11 quality neurological changes, 10 new neurological achievements and her brain was functioning 400% better!!!
All those involved with Neve – doctors/ consultants, NHS therapy team, teachers, friends, family and even her peers, have been astounded at the change in her.
Although this is all amazing, it is still only the beginning of our journey. There are still a lot of hours of therapy required and a lot more money which needs to be raised to give Neve the opportunity to access all the parts of her brain and progress to her full potential.
Sandy, Liz, Neve and Ollie xx
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Aug 9, 2018
Jon, Linda & Mia
Jul 9, 2018
Neve,You are doing amazing! Here's a little gift from me to you.Lots of LoveMia (classmate)xxx
Jun 24, 2018
Lovely to see Neve yesterday and glad of her great progress at the Brumby party
Jun 23, 2018
With love from Helen Brumbys friend x
Liz and Keith Richardson
Jun 22, 2018
Great to see the progress that Neve is already making!
Jun 12, 2018
All the best with Neve's therapy Liz, she's amazing. Xx
Jun 5, 2018
Well done Barker family running for a great cause.Claire, Rob and family xxx
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