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 almost 3 and has global developmental delay, CVI, is NG tube fed, and is on medication daily for his epilepsy and due to recently being diagnosed with Lennox-Gastaut Syndrome we don’t know if seizures will ever be controlled. He cannot currently sit unaided, roll, crawl, talk or walk.
Despite his tough ride so far, Jasper is a really happy boy and puts a smile on anyone’s face.
Raising money and fundraising for Jasper means the world to us. We want to be able to give him any aids or adaptations he needs to help encourage him to develop and grow. Sadly, anything labelled ‘special needs’ is extremely expensive and therefore we are limited to what we can provide for him. Any donations will make the world of difference to Jasper and to us as a family because it means we can give him everything he needs to thrive. One day we hope we can encourage him to walk so he can be alongside his big brother, Jenson, and little sister, Jasmine.
Thank you so much
