Jensen's Journey to Independence

Jensen was born with a very rare neurological condition called Sturge Weber Syndrome which is an over name for many conditions including epilepsy, glucoma, port stain over 3 quarters of his body, vascular malformation, profound global delay sensory processing disorder.  Jensen's first seizure was at 6 mths old and boy was it a shock! we spent weeks in the hospital and finally came home after we knew the drugs he was taking had worked.  Life bumbled along. Jensen's dad and I were never at ease, even a cold would tip Jensen's epilepsy over the edge and into a seizure. By 2016 we spent xmas and new year in the hospital where we had been told that at least twice that he wouldn't make it through, but he is a fighter and by the 4th Jan 2017 we were home and on the road to recovery. In June 2017 something amazing had happened and Jensen had started to bum shuffle.  Now this is amazing because back in Jan 2014 we were told Jensen would never sit independently or roll. But boy he did and at 18 months old he could sit for a short period of time and then began to roll just one side lol, so bum shuffling WOW, Lee and I were over the moon.  Physio was and always has been extremely tough as Jensen is not able to communicate if he is in pain with the vascular malformation, but we increased this and tried to make it fun.  By Jan 2018 another massive blow, Jensen contracted a virus and we were airlifted to hospital where yet again we were put into the position of being told he may not make it through the night. After 2 lumbar punctures of which one was a failed attempt along with 5 different antibiotics because not even the professionals knew what was wrong, they started to wean him off one by one, it was the most horrendous experience of our life. Jensen had lost the ability to sit roll bum shuffle, suck, chew, but his temperature returned to normal and he slowly recovered and we were allowed home.  It took 5 months for him to fully recover, bless him. Jensen started a wonderful special needs school last year and he absolutely loves it.  He has made friends and enjoying the challenges that this new adventure brings for him, but funds are extremely low and so equipment, physio, and just everyday essentials even pads (nappies) as he is unable to do anything for himself costs alot. We get a limited number of pads on the NHS but its just not enough, this alone is hundreds of pounds a month as he needs constant changing so that his port wine stain birth mark doesn't break down through wet and soiled pads ect. Lee and I are excited and frightened by the future but every day Jensen smiles we thank our lucky stars we were given him, so we will carry on day by day trying to make them happy ones with maybe a little independence. We are raising money for phsyio, equipment, and anything else medically needed along the way.