Help needed to get baby Jude to Medical Specalist

Everyone meet Jude!

This special little boy is one of the happiest little boys you’ll ever meet despite the challenges he’s faced with.

Jude is currently 14 months old, born on the 15th September 2022. By the 1st of December 2022 little Jude received the diagnosis he has nystagmus which is a condition effecting the eyes. Jude has this in both eyes along with nystagmus blockage and 6/60 vision currently making him fit the category of legally blind. Although his parents are still waiting for certification of this outside of an ophthalmology write up. By January 2023 an ultrasound shown Jude to have Absent septum pellucidum with fusion of anterior horns and bodies of the lateral ventricles with fullness of lateral ventricle, which was backed up by two MRIs. ASP is a rare brain condition effecting the structure of the brain, meaning the midline of Jude’s brain is not there. Symptoms of this can include behavioural changes as well as seizures and changes to vision. Although there is not much known currently about ASP, it is believed this along with nystagmus are symptoms of bigger conditions and treatment options for these conditions vary depending on the underlying causes.

Jude is currently being seen through services in West Cumbria, 11 months after first being diagnosed with these symptoms Jude is yet to receive a defined diagnosis or treatment plan. Lack of resources locally unfortunately play factor into this.

Judes parents have put their all into conducting research, speaking to charities and trying their best for little Jude. Even raising money for the charities who have supported the family on their way.

After being invited and spending a weekend at the guide dog family weekend Jude’s parents have had the opportunity to speak to a leading specialist based in Great Ormond Street Hospital, London. Not only does this doctor specialise in children specifically but also neuro-ophthalmology, nystagmus, strabismus to name a few.

Amazingly for Jude this specific doctor is very keen to see Jude and had asked to see him within days of reaching out. Unfortunately to the heartbreak of Jude’s parents, this is an offer they were unable to accept. The goal is to still get Jude seen ASAP with the correct diagnosis and treatment plan however the cost of medical treatment, travel etc has caused a barrier in the process.

This is where you come in…

Jude would initially need to be seen private before gaining a treatment plan and seeking a NHS referral for this (depending on urgency of treatment and timescales available through the NHS) even with both parents working full time and having amazing support around this is looking costly and his parents just want to give him the best possible chance for the future.

The aim is to get Jude to London where he has the specialist waiting for him and a great support team within Guide dogs and Great Ormond Street Hospital on the 24th November.

If anyone can spare anything at all to support Jude and his family in helping Jude get this much needed diagnosis to move forward and give him the best opportunity for his future we would be so grateful