Quite of few of you already heard Jonukas story and that last time we raised a substantial amount of money with the help of all good people. Jonukas with his parents has visited Snowdrop clinic in UK, also visited the cerebral palsy clinic in London and the rest of the money was used on his rehabilitation centres which are very expensive and mostly are private.

Jonas was diagnosed with CDKL5 disorder , CDKL5 is a rare x- linked genetic disorder that results in early onset, difficult to control seizures and severe neurodevelopmental impairment that was first identified in 2004. Most children with CDKL5 do not walk, almost all do not talk and they have a range of other symptoms. Sadly Jonukas has a visual impairment, most of times he is laid down as he doesn’t hold his head. There is no cure for the brain damage but with the help of lots of therapy we can help to reduce the impact of his condition has on him.

Unfortunately due to the limitations the NHS face they cannot provide Jonukas with the intensive therapy he needs. The therapies, exercises equipment and extras, come at a high cost and are not usually financially viable to many.

Jonukas is currently abroad for 3 months in rehabilitation clinic where he is trying to learn to hold a toy, to stand on his feet and to hold his head. He really hates to do this. Everyone around definitely can hear when Jonas is doing his exercises:).

We are hoping to raise some money to support Jonukas to access these therapies for as long as possible, he is making progress and this wouldn’t be happening without the support we have been getting. Our hope is one day Jonas will walk and be able to communicate.

Any donation makes a difference to the therapies Jonukas can have. Let’s make this beautiful child’s life better and his fighting parents that are not given up.