Jacob is 6 years and from Northwich. He was born at 30 weeks, he had a normal birth and, despite suffering a bilateral pneumothorax in his first two days and spending several weeks in an incubator. 7 weeks later we found out that Jacob had suffered severe brain damage at birth, resulting in PVL. We still do not have any answers as to how this happened, however, the impact was devastating, especially on my wife. It is like we were told to love one child and then, ‘oh no, sorry, this one is yours.’
At the time we were told that he would not have use of all four limbs, that he wouldn’t walk, and that he would likely to be partially sighted or even blind. When my wife asked for help, all the doctors said was, ‘go home and love him.’
Jacob was later diagnosed as having Grade v cerebral palsy, something we knew already, as well as having dystonia. He has also been diagnosed as being partially sighted with Cortical Visual Impairment (CVI) and is non-verbal. He cannot sit up and he also has difficulty eating and drinking.
However, Jacob is also super bright, cognitively very aware, with a wicked sense of humour!
A couple of years ago we raised some funds to pay for a specialist Hart Walker, so that we could start to build towards Jacob taking some steps. Whilst he can do it with the right encouragement (normally his favourite music!), his dystonia really holds him back, but we need to work on rebuilding his muscle pathways, as well as loosening his muscles.
Jacob also had hip displacement surgery in 2020, just as the covid pandemic broke out and, as a result, we lost all physio support. Consequently, Jacob lost all the strength he had built up in his legs and ever since his hamstrings have become extremely tight.
We have recently started neuro-rehab therapy and have noticed a huge difference in him physically as well as emotionally already. He does horse riding once a week and this is helping improve his core control. We are also looking at HBOT oxygen therapy.
However, without regular traditional physio, as well as ABM/Movement Lessons, and the intensive neuro- rehab, Jacob’s muscles will always revert to being tight – causing great pain, especially at night.
We would like to raise enough money so that Jacob can continue to have regular and intensive neuro-rehab, as well as traditional physio, and to ensure any equipment he might need, such as specialist communication devices (we have been told Jacob could be a candidate for), as well as wheelchairs etc.
This is to give Jacob the best possible chance of having a feeling of freedom, whether it be playing independently or even walking using his Walker or cycling with his trike. He also gets very frustrated at not being able to communicate, and so communication has also become an important thing for us, especially as he now has two siblings (Alice 19 months and Lucas 5 months).
We would also like to look at SDR surgery, to ensure he can live a life in relative comfort, however, because of Jacob’s dystonia, we understand this may not be possible.
