KIND-HEARTED siblings have raised hundreds of pounds for charity after their baby brother was diagnosed with a rare neurological condition.
Issac, 9 and Everlyn, 6, of St Bees, are raising awareness of their baby brother, Jude’s condition and have walked five kilometres a day for seven days, in aid of Nystagmus Network.
Jude has been diagnosed with Nystagmus – a complex eye condition - and absence of the septum pellucidum - a rare brain condition - after his parents, Kate and Dion Jackson, noticed he wasn’t focusing at around seven weeks old.
By the time he was two months old, he hadn’t looked at either of his parents - or anyone else.
Paying more attention to his eyes, Kate and Dion noticed a little roving wobble, which they mentioned to the health visitor at Jude’s next check-up.
He was referred to a GP the same day and was then referred to pediatric ophthalmology. He was seen and diagnosed with bilateral possibly reduced visual acuity with Nystagmus.
Two weeks later, Dion noticed a lump on Jude’s neck. When it failed to clear up with a dose of antibiotics, Jude was given rapid access appointment on the children’s ward to be seen by a consultant.
The lump on Jude’s neck was nothing to worry about, however the consultant seemed to show an interest in Jude’s eye movements and picked up on his parents’ worries.
He suggested Jude be sent for a skull ultrasound and this revealed the absence of the septum pellucidum – a rare neurological condition that involves the thin membrane located between the two halves of the brain.
Jude has since had two MRI scans to confirm the findings and is currently going through testing and is being seen by a number of specialists.
Kate said the family had never heard of Nystagmus until Jude’s diagnosis. It is reported to affect around 1 in 1,000 people yet it is not a widely known condition.
Jude is now nearly 10 months old and despite the challenges he has faced, is 'thriving' and hitting all of his milestones.
Kate said: “He is the happiest little boy. The only sign of him having any of this is his unique, adorable eye wobble.
“Everything he is doing so far is as another child his age would be doing. He’s sitting up, clapping, crawling and saying ‘mama’ and dada’. He’s doing everything we’ve been waiting for him to do.”
Jude’s siblings wanted to raise awareness of his condition to help answer any questions people may have.
Kate said: “They started to be more aware of people’s reactions to Jude. They knew what was going on as he’d had quite a lot of hospital appointments and you can tell by looking at him that his eyes wobble and there is something a bit different.
“That’s just Jude – that’s how it’s always been to them. They’ve been more aware of people questioning his eyes in pubic.
“Everlyn came to us and said ‘is there anything we can do to teach people?’ We thought as well as raising awareness, we could do something to give back for the help that we get because we didn’t understand it at the start, either.”
Isaac and Everlyn have raised over £350 for Nystagmus Network. They are planning to hold more fundraising events to raise money for RNIB and Guide Dogs UK.
Kate added: “I’m immensely proud of them. They have been amazing with Jude.”
To donate, go to: www.justgiving.com/page/judejacksonsjourney
Comments: Our rules
We want our comments to be a lively and valuable part of our community - a place where readers can debate and engage with the most important local issues. The ability to comment on our stories is a privilege, not a right, however, and that privilege may be withdrawn if it is abused or misused.
Please report any comments that break our rules.
Read the rules here