Just4Children wish to fund therapy at Blue Skies Ahead and specialist equipment to help Albert achieve the best possible quality of life.
Albert is seven months old and lives with his mum, dad and sister in Liverpool.
From the day Albert was born he was having seizures, and by day 3 of his life things had progressed so quickly that he was intubated in paediatric intensive care . The doctors struggled to work out what was causing these seizures that they could not seem to stop, but after genetic testing Albert was found to have a randomised mutation on his SCN2A gene which causes him severe drug-resistant seizures, profound psychomotor delay, visual impairment, and unfortunately a short life expectancy. His condition is called Early Infantile Developmental and Epileptic Encephalopathy, and Albert is the only child ever recorded with the specific genetic mutation that has caused it.
Albert spent the first few months of his life on the neurology ward of Alder Hey hospital, having up to 70 seizures a day, and his parents were told that Albert would seize every day of his life and that he would be unable to walk, talk, stand, or sit independently. However, somehow, a medication combination has been found that has greatly reduced Albert’s seizures and has allowed him to spend more time at home than at the hospital. This has given his parents the hope that perhaps with the right help and specialist support Albert will be able to do other things that were seen as impossible in the first few months of his life.
Albert receives some physiotherapy and occupational therapy on the NHS, but due to the extensive help he needs his parents have sought out specialist private therapists to help Albert achieve his best possible potential. He currently does not have head or trunk control, cannot reach for toys or objects, and his brain struggles to process what his eyes are seeing. He has also retained many of his newborn primitive reflexes which get in the way of him learning more age appropriate movements.
By attending Blue Skies Ahead specialist neurological rehabilitation therapy weekly we hope that Albert is able to develop towards a better, and more comfortable, quality of life. Albert is a very complex little boy and he needs specialist therapists who can understand his particular challenges, and therefore implement exercises and routines that work for him and his unique brain.
Since starting therapy at Blue Skies Ahead Albert has surprisingly began to recognise his body. He has started to purposefully kick his legs, and also raise his arms.
We would like to start raising money for Just4Children to provide Albert with these specialist private therapies to help him live his best life and make the most of the abilities he has. Monies raised will also be used to fund specialist equipment for Albert to help with his mobility and comfort.
