Penny was a normal developing child to the age of two until an unexplained acquired brain injury accrued. Help Just4Children to provide Penny with essential therapies and specialist equipment.
Penny is a 8 year old child from Ballyclare with many daily challenges. Penny was born in December 2016, a healthy baby girl but at the age of two, after suffering from a virus which caused inflammation to her brain, Penny lost her mobility and speech, making Penny non verbal. Penny’s gross and fine motor skills were also severely impaired. Penny was diagnosed with Cerebral Vision Impairment (CVI) in 2022 which is a form of visual impairment caused by the brain not being able to process information from the eyes passing along the visual pathways in the brain.
Penny was also diagnosed with a very rare Marbach-Schaaf neurodevelopmental syndrome (MASNS) in 2023. This syndrome affects individuals with movement disorders, such as dyspraxia and apraxia. Penny requires extensive therapies to help regain skills that were lost.
The level of care Penny needs has prevented Penny accessing traditional childcare and her (mum Heather) from working. This has led to our family being under considerable financial strain due to the level of expenditure required to fund effective therapies for Penny.
Being unable to find rehabilitation from main stream medicine, the family have had to look outside for private and alternative treatments and it was there that we began to find hope that we could find our little girl again.
In 2023 Penny and her mother flew to America to complete a two week Melillo Method intensive therapy in the Melillo Centre for Developing Minds run by Dr Robert Melillo. Dr Robert Melillo is one of the world’s most sought after and respected experts in Developmental Functional Neurology. The Melillo Method is different because it looks at hemispheric integration taking the whole brain development into account. Primitive reflexes are at the bottom, or the foundation, of the nervous system. But once reflexes develop, or the lower level brain, then the hemispheres develop horizontally so that there is good communication between the two. From Penny’s initial assessment it was clear that Penny had a very severe imbalance in her right hemisphere which was leading to many of her developmental challenges.
There has been a definite, and very positive change in Penny development since her time in New York. She is demonstrating better attention, following instructions, making choices by tapping a written word, her eye contact is better, sitting posture is more upright. She also has demonstrated understanding of reading skills. Unfortunately, speech has still not returned and with the consultation of Dr Melillo it is advised that annual 2 week intensives in America (approximately £10,000 including accommodation and flights) would be extremely beneficial for Penny’s progress once or twice a year.
On top of these intensives Penny also attends other private therapies in Ireland to help with her rehabilitation like horse riding, swimming, occupational therapy, physio and speech therapy. These are all paid privately as there is no consistent approach within our health trust.
We wholeheartedly appreciate everyone’s support in helping us find our little girl.
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