Luke’s CVI CP Journey

Just4Children are seeking to help provide equipment and therapy that Luke needs so he can continue to shine and access as many experiences as his peers.
£6730
Total raised
26%
£25,000.00
Target
Donate Fundraise

137 donations

Luke’s CVI CP Journey

Just4Children are seeking to help provide equipment and therapy that Luke needs so he can continue to shine and access as many experiences as his peers.

Luke is aged 2 years from York. He was born early October 2021. On Thursday 7th April, a day before turning 6 months old, we finally received a diagnosis. It took 5 months of back and forth to the GP, each time, being sent away with a higher dose of reflux medication and listening to the same phrase from each GP we saw ‘Healthy baby’. Luke was far from a healthy baby. Enough was enough and I decided that mummy instinct knew best. Luke was diagnosed with IS (Infantile Spasms, also known as West Syndrome), a form of epilepsy, causing seizures that had been causing more and more damage to his brain, the longer it went untreated. He was having multiple seizures a day which was affecting his development.

We were told that this could cause long term damage. What kind of damage and how severe was unknown at that stage.

Soon after this, we noticed that Luke wasn’t visually tracking objects. He was referred to the eye specialist and after several tests, Luke was diagnosed with CVI (Cerebral Visual Impairment). They found that his eyes were healthy and messages were reaching his brain but he couldn’t process what he was seeing. We’re still unsure as to what Luke can actually see but with lots of support and resources, we are hoping to help build new visual pathways.

More recently, Luke has been diagnosed with Cerebral Palsy, which affects his whole body. He is working particularly hard with tummy time physio to acquire the strength he needs to gain some form of independence. To help further with this, Luke needs specialist equipment to ensure Luke can access playtimes and being out and about. He can sometimes miss out on opportunities due to accessibility.

Luke also requires full time care due to his complex needs. His only way of communication is crying or smiling. Luke needs regular private physio to maximise his potential. In addition, Luke loves the water and would also benefit from regular hydrotherapy sessions.

Thank you.

 

Follow Luke on Facebook and Instagram

Info for donors

Application for support