Albert's wish to explore the world!
Albert has a very rare neurological disorder that is called Bilateral Perisylvian Polymicrogyria (B P P) that affects cerebral cortex (the outer surface of the brain) Albert has this very severely,as on Alberts MRI Scan it showed most parts of Albert's brain is affected (Bilateral) this means for Albert he will be non verbal,unable to walk,sit unaided and not be able to even eat,because a test called a video fluroscopy showed all food and fluid was going straight onto his lungs and his is again severe so will be tube fed for the rest of his life,he is allowed small tasters but no more. We are currently waiting for an operation at The Evelina London Children's Hospital called a gastrostomy so he can be fed straight through the stomach wall rather than the naso gastric tube which has to be changed weekly which is very distressing for Albert,sometimes there is no community nurse available to come to our area,and I have to take him to Margate to have it fitted as I dont drive and I am a single Mom,I have to have my childminder round and get a taxi there and back which is very costly,friends from the local Salvation Army have been able to provide help with a lift now and again and I've been very grateful. Because Alberts condition is so rare the doctors can't really give me many answers but heartbreakingly children that suffer with this condition die at an early age due to respiritory problems. I just want to make Alberts life as nice as possible for him and I hope and pray that I can raise enough money for a specialized wheelchair for him because the NHS wont fund one for him until at he's at least approx 3-4 years old. To have this wheelchair would not only give Albert comfort and freedom, it will also allow us as a family to venture out more. I am currently using a normal buggy for him with rolled up towels to try and support him,but its really not very good at all because Albert cannot control his neck alongside all of the muscles in his body and even physiotherapy - albeit he does enjoy that,sadly isn't likely to change Albert's outlook. But aside from all the doom & gloom - Albert is the sweetest and most happy little boy ever,with the best of smiles and gorgeous big brown eyes with long eyelashes has melted the hearts of many in our home town of Deal ! Any help from anyone will be greatfuly recieved and Albert and I will be eternally greatful !
Albert's symptoms:
: Mild to severe intellectual disability
: Sudden involuntary spasms of all muscles (uncontrolled movement)
: Severe development delay
: Paralysis of many muscles
: Possible seizures have now started awaiting further tests
: Problem with chromosone number 4 waiting to hear more on this
: Microcephaly (abnormally small head)
:Problems with vision,crossed eyes a lot.
There is no cure, just help from speech & language,physiotherapy, occupational therapy specialist nursing team,dietician,and his lovely Consultant Paediatrican.
ALBERT'S WISH TO EXPLORE THE WORLD !
