Help to support Jasper aged one from Swindon who has Lissencephaly. This means ‘smooth brain’ and therefore he is globally developmentally delayed in all areas.
At 11 weeks old Jasper was taken to hospital because he kept having unknown episodes. After many thoughts of what it could be, it was confirmed Jasper was having focal seizures. He was given all sorts of tests including bloods, a lumbar puncture, urine dips, blood sugar tests and more. They all came back negative but the focal seizures continued so he was admitted to hospital where they popped him on a drip to administer anti-convulsants and antibiotics in case of infection.
The following day Jasper was given an MRI scan. This resulted in the devastating news that Jasper has a rare brain disorder called Lissencephaly. This in shorter terms means ‘smooth brain’ which means during pregnancy his brain didn’t develop properly. As a result of this condition he also has epilepsy. This diagnosis is so rare that it only occurs in 1 in 100000. We were told a lot of kids don’t make it to 2, but most won’t make it past 10.
Jasper is now 1 and has global developmental delay, CVI (cortical vision impairment) and is on medication daily for his epilepsy. He cannot currently sit unaided, roll, crawl, walk, put pressure on his arms and his head control is still not 100%. He is also on a pureed only diet at present.
Jasper sees multiple professionals including physiotherapists, occupational therapists, a vision therapist, a vision and movement therapist, has regular appointments with his paediatrician, has regular appointments with ophthalmology, does hydrotherapy and has close contact with his epilepsy nurse.
Despite his tough ride so far, Jasper is a really happy boy and puts a smile on anyone’s face. We want to raise as much as possible so we can give him any aids or adaptations to his living environment he needs to help encourage him to develop, to give us as many family days and trips out to make memories. We would also love to be able to help him further to one day be able to walk with his older brother Jenson.
Thank you
